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Author Topic: Positive with No Real Explanation: only oral or acupuncture  (Read 4854 times)

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Offline Machopeful

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Positive with No Real Explanation: only oral or acupuncture
« on: August 08, 2019, 12:36:55 pm »
Hi everyone.
I was diagnosed at the end of June, and have begun treatment (Biktarvy) and all my numbers are great today. I had some symptoms (fatigue and swollen lymph nodes) which caused me to get the complete blood panel and diagnosis. Iíve been told to focus on the future and not thinking back to how I was exposed. I canít seem to do that because I have never had a high risk exposure event. Iíll provide more background below, but having not engaged in any risky behavior is affecting my mental health.

In my personal life, i have always practiced safe sex unless Iím in a relationship. Despite this, I have always been tested regularly. My last test was in late October 2018, with all negative results. Currently Iím in a relationship and he tested negative after my diagnosis. So barring some extraordinary course of events, he could not be the source and unprotected sex cannot account for my infection.
During a vacation in late January we did have a protected three way. We both topped the third partner with condoms. There was no damage to the condoms. During this encounter there was insertative fallacio without condoms.  Iíve read there is some small risk with oral. The data seems to indicate the risk is nearly zero. This was also several months before I had symptoms.

This brings me to what I believe is how I may have been infected, which is acupuncture. On March 29, I visited a certified community acupuncture facility where I received an hour long treatment (my second ever). This facility has one large room with multiple treatments being performed at the same time. After the treatment I was getting dressed I noticed he failed to remove two of the needles and there were several spots bleeding. I took this as odd, but didnít think much about it. Looking back, the acupuncturist wasnít wearing gloves, didnít disinfect my skin, and for some of the needles there was an obvious removal from a new package but not all. Exactly 3 weeks later I was feeling lethargic and mildly unwell.
I mentioned this to my doctor and he talked about the fact acupuncture needles are supposed to be single use and sterile. He also said it would be nearly impossible to prove if it were the case. Nonetheless, I filed a complaint with the department of health but have yet to hear anything. Assuming this is the exposure event Iím worried there are others who may have similarly been exposed.

Overall Iím doing well. I have an amazing partner and friends who are very close to hiv care and research. They have been supportive. I have great health coverage and am receiving amazing care. I simply hate not  having an explanation for this, and the fact that I wouldnít believe this story if it werenít happening to me.

Thanks for reading my story. Any guidance or advice on any front is greatly appreciated (especially finding answers and/or dealing with the mental side of diagnosis).

Offline Jim Allen

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #1 on: August 08, 2019, 02:33:33 pm »
Hiya

Sorry to hear about the diagnosis, how are your labs looking?
UD? CD4's pretty decent?

As for when & how well presuming that the test you took in October 2018 was accurate it would indicate an event after July 2018. Maybe that helps? As for what well some event that met all the biological & environmental conditions required, getting your penis sucked is out, giving oral is a near negligible risk it does happen and symptoms are a very poor indicator of the when.

Whatever happened, happened there is no point dwelling on it too much or getting get stuck on it. You ask about dealing with the mental side of diagnosis, well asides from "what if" thoughts/dwelling on things, is there anything else bothering you? Have you spoken to any peer support or counselling?

Best, Jim

 
« Last Edit: August 08, 2019, 02:36:29 pm by Jim Allen »
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Offline Machopeful

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #2 on: August 08, 2019, 03:44:45 pm »
Jim,
Thanks for your response. My labs are really good after the first month. I go back again on the 19th. My viral count was 204 after 28 days on biktarvy. My CD4 count is at 972, up from 623 at diagnosis. My doctors said at diagnosis that the virus hadnít had any major affect on my immune system even before treatment. Overall Iím feeling good with no side effects.
As for the exposure. Iíd have to go back 5 years since I had unprotected sex with someone other than my current partner, and that was with my partner at the time after we were tested together.  And I donít perform oral except in a relationship.
Thatís the root of my concern: thereís no risk event other than the acupuncture.
Another ďout thereĒ possibility is that my partner is positive but doesnít have antibodies and this appears negative in tests. I read a CDC report about a situation like this from the 90s, but I donít think itís applicable. Still something like that would be the only way I could understand my exposure.
I have an amazing support system and an overall healthy mentally too. I live in a major city with lots of resources, which is quite the blessing. Iím just at a loss to explain my status. With acupuncture being the most logical explanation, I want to sound the alarm as someone else could have been infected. I filed a report with the department of health, but I havenít heard of any investigation or action.
« Last Edit: August 08, 2019, 03:48:35 pm by Machopeful »

Offline Jim Allen

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #3 on: August 08, 2019, 04:47:12 pm »
Hiya

Sounds like treatment wise you are doing fine and, stop reading the CDC or the 90's case files, both paranoid and you will find all sorts of nonsense, there is a reason those dried up post mid 90's as we simply understood it was rubbish ;D

You had an exposure that met all the conditions required to acquire HIV, presumingly post-July 2018. Your case will not cause any alarm bells. Glad to hear you have plenty of resources around you though, plenty of us don't and it's indeed a blessing as long as you actually use those resources as needed, so make sure you do ;)




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Offline Machopeful

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #4 on: August 08, 2019, 05:04:20 pm »
Yes. Iím great treatment wise and support wise. The reality is thereís no sexual explaination for my exposure. Which leaves acupuncture and the case of others being infected from that facility without knowledge. Like I feel like the department of health should investigate as it would any other infection from a clinical setting. Idk if that makes sense.
« Last Edit: August 08, 2019, 05:07:12 pm by Machopeful »

Offline Jim Allen

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #5 on: August 08, 2019, 05:24:27 pm »
Well you know they can check for safe practices etc, as anyone working with needles needs to be mindful of BBV's but I strongly doubt without excluding other routes they are going to use the resources or ever could confirm specifically what you are looking for, it's a bit like the dentist warnings you see in the media all the time vs actual cases over 40 years that you can count on one hand. 

Anyhow glad to hear you are doing alright treatment wise, keep that going. 

 
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Offline Machopeful

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #6 on: August 08, 2019, 05:29:15 pm »
I guess thatís my point. All other routes have been excluded except.  If it were any other illness from a clinical setting (MRSA, etc) or if I were not a gay man but had the same story, there would be an investigation. The timeline could be longer or shorter and the risk factors are the same. Furthermore, my tests have been the 4th generation tests with a 4 week window for 95%.
Furthermore, Iím willing to fund an epidemiologist if someone can provide a referral.
« Last Edit: August 08, 2019, 05:47:12 pm by Machopeful »

Offline lightalltheway

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #7 on: August 08, 2019, 05:51:38 pm »
Hello Machopeful,

I am sorry to hear that you are not really coping well with your past in regards to your exposure.

Also, I completely can understand and feel your frustration. It is always good to know the full narrative in order to move forward. But the main and only question here will then be, what if we can have access for such information? It is just draining and tiring.

I advice that you look forward during those weak moments. To remember the blessings that surround you such the ones you mentioned: your partner and supportive friends. This is something many people dream to have, and its a fact.

Please stay strong and always here for you to share with me and/ or us your thoughts.

Together we are stronger,
Prince

Offline Machopeful

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #8 on: August 08, 2019, 06:11:34 pm »
Thanks Prince.

Iím coping well. I also know with treatment and ongoing medical care, life expectancy can actually improve from the general population. Furthermore advances in medical science such as CRISPR are making a functional or total cure more plausible.

Itís not a weak moment or anything like that. However the reality is based on all the scientific data the only possible exposure is through acupuncture. I realize the infection has taken hold and that will never change. It is very important to me that something positive comes from this, and it should start with preventing others from being exposed from the same community acupuncture facility.
« Last Edit: August 08, 2019, 06:15:00 pm by Machopeful »

Offline Jim Allen

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #9 on: August 08, 2019, 06:16:31 pm »
I'll be honest you lost me regarding what 4th gen testing and 4 weeks have to do with anything... Did something happen between 4th weeks and 13th week?

Sorry to hear you feel your sexual orientation is a factor in the health department handling your complaint. Not wanting to argue or to start of on the wrong foot so ill just clarify, my answer (thinking) and doubts why the health department will not find the answer you are looking for has nothing to do with your sexual orientation even if you feel its a factor for the health department or part of the point.  You could have the WHO investigate and, my thinking would be the same.

Quote
Furthermore, Iím willing to fund an epidemiologist if someone can provide a referral.

Well, if really comes down to you personally wanting to know that badly if you are the one in 40 years, 78 million cases to confirm the rule, I would start with your ID doctor, I'm sure they can refer as needed and, do some prework by excluding sexual partners regardless if it was safer sex (no such thing as safe) from the last year including the Jan encounter for you. Gives a clearer picture for the next person to work from so to speak.

Although, it's a lot of effort and I do wonder if it's worth it for you?
« Last Edit: August 08, 2019, 06:19:20 pm by Jim Allen »
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Offline Machopeful

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #10 on: August 08, 2019, 06:23:59 pm »
To summarize the original question: in light of all of the evidence do you really believe that the acupuncture is not the most likely explanation for infection?
Your original response would indicate that oral sex and properly used condoms with penetrative anal is highly unlikely and further evidenced by my partner testing negative. This leaves the ONLY possibility as acupuncture or my partner being a carrier. Both of which are statistically unlikely but warrant investigation. Does that make sense?

Offline Machopeful

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #11 on: August 08, 2019, 06:31:37 pm »
I'll be honest you lost me regarding what 4th gen testing and 4 weeks have to do with anything... Did something happen between 4th weeks and 13th week?

No. Nothing happened in those weeks or before or after. Your response implied that there must have been some risk exposure prior to that test. But thereís not anything before or after other than mentioned above.

My comment on sexual orientation is the same. Itís the automatic assumption that because Iím a gay man I must have had unprotected sex and exposure to fluids. My point being that if I were in a different demographic people wouldnít make this assumption and would move more quickly to investigation.

Offline Jim Allen

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #12 on: August 08, 2019, 06:48:46 pm »
?

My original response was that presuming that your test result in Oct-2018 was accurate over July 2018 this would mean that since July 2018 something happened that met all the biological & environmental conditions required for transmission.

Does that make sense to you? I did not go into safer (not safe) sex and condom usage on my initial posts neither did I see any evidence but I accept your testing history and the details as you tell it.

Understand that personally don't give two flying fucks if you think ET gave you HIV, or if rainbows shoot out your ears when having sex.

What I am saying to you is putting in a complaint with the health department and expecting them to prove or confirm it for you, either way, are two different things as they operate with limited resourcing and within a CYA policy. There are always violations by the book to be found in the best or the worst places.

You could go down the route to further investigate this as you say privately, sure, like the odd case in the 40 million we see on things that otherwise confirm the rule, it means tracing people down though and a lot of work and, I question for what for? If you feel you must though and its something that it will give you the opportunity to move on by all mean do.

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Offline Machopeful

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #13 on: August 08, 2019, 06:52:35 pm »
This quote really illustrates my point and frustration.  You initially answered that oral is absolutely not a risk factor, which leaves only acupuncture.
Well, if really comes down to you personally wanting to know that badly if you are the one in 40 years, 78 million cases to confirm the rule,

I"m sure I'm not the first one to contract HIV, or some other virus from acupuncture or unsterilized needles in a clinical setting.  But comments like the one above are the exact reason why cases such as mine that are atypical need to be documented.  I'm sure there are others out there who have a similar experience and don't have the support system I have.  They, like me, are receiving comments like yours above that ignore the actual facts.

Offline Jim Allen

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #14 on: August 08, 2019, 06:59:16 pm »
You initially answered that oral is absolutely not a risk factor, which leaves only acupuncture.

No, I did not, neither does it leave just acupuncture as the route.


I"m sure I'm not the first one to contract HIV, or some other virus from acupuncture or unsterilized needles in a clinical setting.  But comments like the one above are the exact reason why cases such as mine that are atypical need to be documented.  I'm sure there are others out there who have a similar experience and don't have the support system I have.  They, like me, are receiving comments like yours above that ignore the actual facts.

I'm not ignoring facts, nobody here is or has so far.

Rare things happen, sure. Mostly things that confirm the rule, like handshaking is not a risk unless X & Y & Z happen and that is a 1 in a billion-year situation, if you are a rare case that's sucks but you are here now

No. Nothing happened in those weeks or before or after. Your response implied that there must have been some risk exposure prior to that test. But thereís not anything before or after other than mentioned above.

My comment on sexual orientation is the same. Itís the automatic assumption that because Iím a gay man I must have had unprotected sex and exposure to fluids. My point being that if I were in a different demographic people wouldnít make this assumption and would move more quickly to investigation.

I never presumed you had unprotected sex or your orientation for that matter.

You brought up 4 weeks testing, it seemed very specific so I asked for that reason and that reason alone.


« Last Edit: August 08, 2019, 07:01:55 pm by Jim Allen »
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Offline Machopeful

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #15 on: August 08, 2019, 07:15:22 pm »
No, I did not, neither does it leave just acupuncture as the route.

Jim, Please elaborate on what other possibilities could be there that I should consider.  You ruled out oral, so the only other potential exposure to bodily fluids coming in contact with my body is the acupuncture.

Offline Jim Allen

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #16 on: August 08, 2019, 07:54:37 pm »
Again, i did not rule out "Oral" . I was specific that getting you penis sucked was not an issue. I did say that "presuming" your test was accurate in October 2018 it means you had an exposure that meets the conditions needed for HIV transmission post July 2018.

What the exposure was that lead to transmission. Well if you are looking for the acupuncture route i.e exception to confirm the rule, the few in the 40 odd years  putting in a complaint with the health department I doubt is going to give you the answer you are looking for due to the reasons already given and a few more, I've clarified that my answer on this has nothing to do with your sexual orientation (As i don't give a damn, neither was it one of the reasons) even if you feel the health department is biased.

If you are looking to refer the matter privately I said perhaps a good place to start is your ID doctor, the reason behind this is they are already similar with your case, potentially have contacts to assist and, they can also perhaps do some of the preliminary work or even work on excluding some the obvious routes like the partner you have a relationship with & the safer (Not Safe) sex partners etc before referring.

With all that in mind unless you find the source to compare with it's never going to be confirmed in a documented way and, I am just concerned about seeing you getting stuck on this.
« Last Edit: August 08, 2019, 08:00:16 pm by Jim Allen »
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Offline Machopeful

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #17 on: August 08, 2019, 08:37:56 pm »
Again, i did not rule out "Oral" . I was specific that getting you penis sucked was not an issue.
I did not perform oral, only the action that you said is not an issue.  Interestingly enough, my ID doc took an opposite stance on this.  He said transmission from getting head is extremely, but does happen.

I did say that "presuming" your test was accurate in October 2018 it means you had an exposure that meets the conditions needed for HIV transmission post July 2018.
 

In the past 24+ months I have only had sexual contact with my partner and that one three some where condoms were used.  As previously stated, my partner tested negative and I positive.  This leaves the most likely cause as the acupuncture.  Or am I missing something.

My frustration is your repeated comments about being "one in 40 years or 78 million" - that's pejorative and unhelpful and ignores the facts of my situation.  We have to break the stigma and comments like that do not help that collective goal.
« Last Edit: August 08, 2019, 08:40:01 pm by Machopeful »

Offline Jim Allen

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #18 on: August 08, 2019, 09:04:07 pm »
I did not say you did preform oral, but neither did i say "oral" was not a concern.
I said getting your penis sucked is not an HIV risk.

Quote
In the past 24+ months I have only had sexual contact with my partner and that one three some where condoms were used.  As previously stated, my partner tested negative and I positive.  This leaves the most likely cause as the acupuncture.  Or am I missing something.

Well like I said it's safer sex not safe sex, and as for ignoring you I have done no such thing. I'm also not ignoring the facts to my knowledge of your situation by stating how rare it would be, like it or not it would be within that level of rarity, and the context was mostly regarding how to follow-up on such a rare case or not expecting the health department to resolve it, anyhow I do not have any feelings of contempt or disapproval towards you, i'm sorry to hear you feel this way.

To summarize you believe to have acquired HIV from a route not normally or yet seen. I.e news and, if there was such a case thankfully rare in the extreme and, you feel that you should pursue this by all means do, I've even given you tips where I would start and that i doubt the health department is going to be capable/able to give you the answer you seek. My own doubts about the health dept do not related to your sexual orientation

I'm just concerned that you don't get stuck on this.
« Last Edit: August 08, 2019, 09:39:19 pm by Jim Allen »
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Offline leatherman

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #19 on: August 09, 2019, 07:52:30 am »
Quote
He said transmission from getting head is extremely, but does happen
your doctor is completely wrong. HIV transmission is through bodily fluid (semen, blood, breast milk). Unless the person giving had bleeding cuts in their mouth and the person getting had cuts on their penis, there is no way the person giving is able to transmit fluids into the person receiving. besides, HIV transmission from the receiver to the giver is very rare itself - if it even happens at all.

Quote
I'm sure I'm not the first one to contract HIV, or some other virus from acupuncture or unsterilized needles in a clinical setting.
actually if proven you probably would be the first through acupuncture (more on acupuncture needles in a minute). However, unsterilized acupuncture needles are a vector for hepatitis transmission.

which leaves only acupuncture.
the problem with acupuncture as a transmission route is that's not really a blood-to-blood transmission vector. Syringe needles are hollow and when shared between people the blood from an HIV positive person could be infused into someone else and that's one route of HIV transmission besides sex. Acupuncture needles are not hollow which means even if a needle was to pierce into an HIV positive person seconds before piercing into an HIV negative person, the time outside the body is too much (air exposure pretty much destroys the virus), the insertion of the needle is to shallow (otherwises you'd be bleeding like a stuck pig afterwards) and the amount of blood that might be transfered is so negligible (not enough virus could be transferred on such a small surface) as to still be at least a 99.9% chance of not transmitting HIV.

As, at the very worst, it's such a one-in-a-million chance of transmission, there's little chance of much credence being given to your situation by any state health department - regardless of sexual orientation. As it's such a one-in-a-million chance, there is no chance that any state has the resources to to do any follow-up for you. States usually only follow up when there are multiple instances of disease spread.
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Offline Machopeful

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #20 on: August 10, 2019, 05:32:56 am »
Leather man,

Thanks for your response. This is exactly the dilemma Iím facing. I donít have any other sexual partners or risk factors such as drug use. They truly are the only logical modes of transmission and are not common at all. The only other thing would be that my partners repeated negative tests are false negatives, but that too is not necessarily possible. Because of this fact it makes me worry about even things like casual contact, which I know is not possible. I simply cannot explain exposure outside of oral or acupuncture. With my partner having engaged in the same activity with the threesome, it puts acupuncture as the only true option. I fully understand acupuncture needles not being hollow and unlikely too.
« Last Edit: August 10, 2019, 05:36:01 am by Machopeful »

Offline leatherman

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #21 on: August 10, 2019, 07:53:17 am »
I simply cannot explain exposure outside of oral or acupuncture.
join the crowd. honestly, many of us can't adequately explain our exposure risk.... and in the long run it doesn't matter. Most people who have transmitted/spread HIV did it without even knowing that they were infected. However, once you've acquired HIV, the how no longer matters because what matters then is getting the right treatment and getting virally suppressed.

Quote
I was diagnosed at the end of June, and have begun treatment (Biktarvy) and all my numbers are great today.
How are things going with the Biktarvy? When you say all your numbers are great, what do you mean? I'm surprised that you've already had a follow-up viral load/cd4 test as you've only been on the med such a short time. Were your numbers pretty good to start with at diagnosis then?
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Offline Machopeful

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #22 on: August 11, 2019, 08:15:46 am »
join the crowd. honestly, many of us can't adequately explain our exposure risk...
Its just odd that my exposure cannot be explained by sexual contact or sexual partners. 

How are things going with the Biktarvy? When you say all your numbers are great, what do you mean? I'm surprised that you've already had a follow-up viral load/cd4 test as you've only been on the med such a short time. Were your numbers pretty good to start with at diagnosis then?
My diagnosis occurred with a full blood panel on June 20.  At that time, my white blood cell, etc. were all in normal range.  On the same day, I visited a private facility where my friend is a doctor and had a confirmatory test and viral load.  That confirmed the diagnosis and the viral count was 67k. My doctor friend referred me to an ID doctor who I saw on the following Monday.
Results from blood draws with my ID doc on June 24 yielded a viral count of 149k, CD4 count of 623, CD8 ABS count of 3,455, .18 helper/suppressor ratio. The thing that jumped out to me was the difference in my viral count over 4 days (67 vs 149k). These were from different labs and I read it can be +/- 3x and just kind of moved forward.
I had labs again on July 24 (the same day i started Biktarvy), which yielded a viral count of 204, CD4 count of 972, CD8 of 1968, .49 helper/suppressor ratio.  Still a little away from undetectable and the CD4-CD8 ratio is a bit off, but overall very well. 
I will have another blood draw and labs on August 19 and can provide those numbers when they're available (typically 3-4 days).  I understand i'm blessed and in a situation that very few are in at the time of diagnosis.  I have a great support system, access to truly world class doctors and healthcare, good financial resources, and great medical coverage. I have friends who work in HIV medicine and research.  Long before my diagnosis I had a conversation about research one friend was doing which showed with constant care positive patients life expectancy was actually greater than the general population.  Those friends are also connected to many of the trails for a cure.  The recent news of Temple University's CRISPR work prompted a conversation where one friend suggested there were several other promising developments and he thinks a cure could be 5-7 years away.
Biktarvy has been great.  I have not experienced any major symptoms. I have had some vivid dreams, but nothing bad.  I take the pill between 5:30-6pm everyday.  The ability to take with or without food and with limited other interactions has been fantastic. 
« Last Edit: August 11, 2019, 08:18:11 am by Machopeful »

Offline HIVSince1995

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #23 on: August 11, 2019, 10:41:39 am »
Hey @Machopeful,

You and I are in the same position.  I was Dx with HIV over 20 years ago and have almost no explanation for when or how the virus got in me.

OK, there is one of the tricks I learned in therapy.  Most people including doctors say, "how you contracted the virus".  It's not a huge difference really.  One way is "how the virus got in me" and the other way is "how I contracted the virus".

Yet, it changed me to look at it as the virus finding me and not me finding the virus.  One way, I can consider myself careless and irresponsible.  The other way, it's like chickenpox - I had them in kindergarten but didn't "do" anything to contract the virus.  The virus got in me.

Like you, I'm a top and used a condom.  In the mid-1980s I had multiple surgeries and some blood transfusions.   For the longest time, I focused on those transfusions as being the "cause" of the virus.

Therapy with a therapist familiar with PLWH helped me a great deal.  I know there are people who don't believe that one 50 minute hours a week telling a stranger your problems (and then paying them money to listen) will help.  Those skeptics are right.  It takes work, lots and lots of work.  50 minutes a week telling a therapist about my feelings and what was happening was a start - working on issues, learning to tell family and overcome the fear of rejection, being willing to change meds because of an issue the doctor sees (trust me when something is working changing to something else is hard), applying for ADAP (it took me over 5 years to apply for ADAP after it was created) all took work on my part.

Even understanding that anxiety and depression will happen and working on ways to move out of that space took work.  Yes, the therapist helped but, I had to be the one in the moment when living my life that brought the skills I learned in therapy to the situation.

How HIV got inside me still crosses my mind from time to time.  Is oral sex as low risk as they say?  Was it the blood transfusions?  Being a top, was it those very rare broken condoms?

The thing is, it does matter how HIV got inside you if you want to know.  Don't let anyone tell you to "just move on", "focus on the future".  That sounds great if you say it really fast but, we both know that nagging feeling will never go away. 

One last point, I'm not saying get into therapy.  Maybe you will and perhaps you'll never give therapy a try.  All the work I did as a result of therapy could have been done without the $50 co-pay every week. 

The work was about self-awareness, recognizing what was happening and dealing with it while it was happening.  I'm sure a yoga group, joining a gym, reading a book on being self-awareness, finding a support group are all great ways to work through the issue of how he virus go inside you.

I'd wish you good luck but, you don't need it.  So, I'll wish you courage and strength - both of which you already have.
Diagnosed - May 1995 / Lowest T-Cells 170 - Nov 1995 / Highest Viral Load - Over 5 million - Nov 1995 / Started on HIV Meds - January 1996 / Various "cocktails" changed to mitigate side effects which included diarrhea, nightmares, bloating, lipodystrophy and neuropathy / Meds changed several to make them easier to take.  Examples: fewer pills per day, coordinating pills that need to be taken with or without food. Current Meds: Descovy, Tivicay / Viral Level <20
T Cells 350

Offline leatherman

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #24 on: August 11, 2019, 10:56:41 am »
June 20
June 24
July 24
August 19
good grief! who's paying for all this lab work?!? and who's requesting it?!? especially with numbers like yours which haven't been too bad. The only people I've known who have had blood work done that frequently were those dying of AIDS at diagnosis and immediately being put onto meds.

Treating HIV is not a race, it's a long-term rally. Guidelines put regular testing every at every 3-6 months.

btw you really need to only be concerned about the viral load number.... and only a little bit about the cd4 count - although in your case with such high counts, you don't need to care about that number at all. Your cd4s are clearly fine and you only need to remain adherent to your ARVs to keep HIV suppressed.

also If you go 2 yrs at UD and remain above >500 cd4s, you only need one viral load test a year and no cd4 count. that'll be a lot of savings in time and money.
leatherman (aka mIkIE)


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Offline Jim Allen

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #25 on: August 11, 2019, 11:01:13 am »
@HIVSince1995

Welcome to the forum, as a new member could you please open an introduction thread first and, introduce yourself to the forum members that would be appreciated. Let us know as an example;  how you are getting on? What treatment are you taking, how is that going? What your labs are like etc etc

Thank you

Jim
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Offline HIVSince1995

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #26 on: August 11, 2019, 03:26:22 pm »
Hey @Jim Allen ,

I'd be happy to post an introduction thread. 

I have, however, gone a bit cross-eyed looking for the "Introduction" category.   Really, honestly, I've looked.

The best I could find was "I've just test + for HIV" but, that didn't seem appropriate.

Which is the best category for Introductions?
Diagnosed - May 1995 / Lowest T-Cells 170 - Nov 1995 / Highest Viral Load - Over 5 million - Nov 1995 / Started on HIV Meds - January 1996 / Various "cocktails" changed to mitigate side effects which included diarrhea, nightmares, bloating, lipodystrophy and neuropathy / Meds changed several to make them easier to take.  Examples: fewer pills per day, coordinating pills that need to be taken with or without food. Current Meds: Descovy, Tivicay / Viral Level <20
T Cells 350

Offline leatherman

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #27 on: August 11, 2019, 03:58:31 pm »
Which is the best category for Introductions?
"Living with HIV" will give you the most exposure to the forums
while "Long-Term Survivors" will get a smaller response (because it's a preHAART LTS forum)
leatherman (aka mIkIE)


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Offline Machopeful

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #28 on: August 11, 2019, 07:56:45 pm »
@HIVSince1995 - Thank you for sharing your story and your words of support.  I truly appreciate it and you.

good grief! who's paying for all this lab work?!? and who's requesting it?!?
My first appointment with my ID doc was on June 24, and he has requested the monthly updates. He is one of the leaders in the field, and I 100% trust his guidance and judgement.  He did say that he orders a lot up front but it will taper off pretty quickly.  Everything prior to that was requested by and paid for by me directly.  I first ordered a full blood panel because my PCP didn't and we couldn't explain my fatigue/malaise.  Those results came back as positive and I immediately reached out to an MD friend who's dedicated his life to HIV care for advice.  That friend confirmed the diagnosis and provided the referral to my ID doc. 
Is monthly testing unusual at diagnosis/initial treatment in the US?
« Last Edit: August 11, 2019, 07:58:57 pm by Machopeful »

Offline leatherman

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #29 on: August 11, 2019, 08:26:19 pm »
Is monthly testing unusual at diagnosis/initial treatment in the US?
with that viral load and cd4 count? yes most definitely that is unusual. most providers would start a patient like you (someone who tested so clearly in the initial stages of infection, with high cd4s still, with no OIs, and with hardly any symptoms to speak of) on meds with that first test and then not retested you until 3 months later.
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Offline venom_X

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #30 on: August 12, 2019, 03:52:55 pm »
Hi Machopeful,

Seems that our experiences are very similar. I also couldn't identify any apparent transmission event other than the surgical procedure (and yes I also had acupuncture couple of weeks prior but I didn't include it as a transmission risk because I had the surgery and the timeframe fits better)

Your CD4 baseline and recovery are excellent, I wish I could be as lucky. Can you share your CD8 count at diagnosis and 1 month after ART? How about your Neutrophils count?
« Last Edit: August 12, 2019, 03:58:20 pm by venom_X »
Infected Mid June, 2019
Acute syndrome late June, started Biktarvy
3 weeks post infection (1 week on ART): VL: 330k, CD4 400 (33%), CD8 460, CD4/CD8 ratio: 0.9
5 weeks pi: VL: 300, CD4: 500 (30%), CD8: 690, ratio: 0.7
8 weeks: VL: 30,  CD4: 590 (28%), CD8: 920, ratio: 0.6
12 weeks: VL <30, CD4: 750 (37%), CD8: 700, ratio 1.1
20 weeks: VL<30, CD4 550 (dropped from 750 from 2 months ago, 38%), CD8 450, Ratio 1.2, elevated liver enzymes

Offline Machopeful

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #31 on: August 12, 2019, 06:45:40 pm »
Hi venom_X  Thank you for sharing your experience.  Its really good to know I'm not alone. I'm sorry to hear your CD4 count isn't rebounding as well.  How are you?

Your CD4 baseline and recovery are excellent, I wish I could be as lucky. Can you share your CD8 count at diagnosis and 1 month after ART? How about your Neutrophils count?

CD8 was 3,455 at diagnosis and 1,968 a month later.  Neutrophils were 5,162 at diagnosis and 2,323 the following month.

Offline venom_X

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #32 on: August 18, 2019, 10:39:51 pm »

CD8 was 3,455 at diagnosis and 1,968 a month later.  Neutrophils were 5,162 at diagnosis and 2,323 the following month.

Glad that your CD8 counts are dropping with the treatment, and with the rising CD4 counts, it all goes to the right direction. Do you still have any symptoms of the acute infection now more than a month on treatment? I still have afternoon fevers up to 37.5 (99.5f) almost daily even now 2 months after infection and 1.5 months on treatment and I lost 15 lbs since infected. I'm worried I have other co-morbidity exacerbated by the infection.
Infected Mid June, 2019
Acute syndrome late June, started Biktarvy
3 weeks post infection (1 week on ART): VL: 330k, CD4 400 (33%), CD8 460, CD4/CD8 ratio: 0.9
5 weeks pi: VL: 300, CD4: 500 (30%), CD8: 690, ratio: 0.7
8 weeks: VL: 30,  CD4: 590 (28%), CD8: 920, ratio: 0.6
12 weeks: VL <30, CD4: 750 (37%), CD8: 700, ratio 1.1
20 weeks: VL<30, CD4 550 (dropped from 750 from 2 months ago, 38%), CD8 450, Ratio 1.2, elevated liver enzymes

Offline Machopeful

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #33 on: August 19, 2019, 07:03:07 pm »
Do you still have any symptoms of the acute infection now more than a month on treatment?

Venom, I'm not sure how helpful my experience will be. I only had a couple of symptoms during acute infection.  I disregarded these symptoms as possible HIV infection, because I believed I did not have any chance of exposure.  Looking back, the acupuncture seems to be the most likely source of infection - likely a tainted guide.  23 days after my acupuncture session I had a very mild fever and felt fatigued.  This lasted for a few days, followed by an unexplained rash on my left hand and swollen lymph nodes.  I did not have an ongoing fever.  Within a week or so of starting Biktarvy both the rash and lymph node swelling went away. 

I had another round of labs today.  I will post those as soon as I get them.  I also have an appointment to talk with the health department live.  Wish me luck.

Offline Machopeful

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #34 on: August 23, 2019, 10:57:05 pm »
Hi everyone. I have a few things to report. I just got my August results and Iím officially undetectable. My CD4 count is at 1001. All of my numbers are in the normal range except for the CD4-CD8 ratio that is still a little off from normal range.
The health department has begun investigating my situation and the acupuncture clinic. Itís still early but itís comforting to know the professionals do believe acupuncture is a possible explanation.


Offline Jim Allen

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #35 on: August 23, 2019, 10:58:11 pm »
Congrats on the UD  :)
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Offline leatherman

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #36 on: August 24, 2019, 07:14:04 am »
I just got my August results and Iím officially undetectable. My CD4 count is at 1001.
excellent news!

hopefully your next lab work isn't until late Nov or Dec. If it's sooner than that, cancel that appointment and talk to your doctor about the lab overkill, or find another doctor that won't waste all those resources. ;)
leatherman (aka mIkIE)


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Offline virgo313

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #37 on: August 24, 2019, 10:58:27 am »
If any sooner then 3 months, ask if he/she has just brought a new Mercedez Benz?  ;D
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

Offline Gladragsguy

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #38 on: September 04, 2019, 12:22:57 pm »
Macho what was your initial viral load? First test?

Offline Machopeful

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #39 on: September 04, 2019, 08:53:05 pm »
Macho what was your initial viral load? First test?

My first test on 20 June was 67,000. My first doctor visit was four days later on 24 June and was 149,000. After about a month on Biktarvy it was down to 205 and after two months UD.

Is there any insight to be gained from my viral load before treatment (also knowing my CD4 count was never ďabnormalĒ)?

Offline Gladragsguy

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #40 on: September 05, 2019, 01:52:34 pm »
You can use charting to further approximate the length of infection. Have you notified the 3rd party of the situation? Has your partner been retested?

Offline Machopeful

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #41 on: September 05, 2019, 08:36:51 pm »
You can use charting to further approximate the length of infection.

How do I use charting?

Yes. The health department is investigating the acupuncture facility. The more I think about it another potential is a colonoscopy on 30 May. I keep thinking about my normal CD4 and whether the colonoscopy could be the source.
« Last Edit: September 05, 2019, 08:44:05 pm by Machopeful »

Offline Gladragsguy

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #42 on: September 06, 2019, 06:35:12 am »
Have you notified the third party? What was their response?
 Has your BF been retested?

Offline Gladragsguy

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #43 on: September 06, 2019, 06:48:04 am »
Sorry I meant the third part of the threesome.

Offline Machopeful

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #44 on: September 06, 2019, 07:37:25 am »
Have you notified the third party? What was their response?
 Has your BF been retested?

Yes. Confirming there is no sexual explanation for my exposure.

Offline Jim Allen

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #45 on: September 06, 2019, 07:45:21 pm »
Mod note:

@Machopeful

Firstly I truly wish you well and I hope you stick around for support from the members when it comes to living with HIV & Treatment, it's not always an easy path and the people here are very supportive.   

That said regarding the transmission theories, in particular, the acupuncture situation that you described is simply a no-HIV risk scenario. There is no way you acquired HIV the way you described and, I can't allow HIV transmission myths to be presented here as anything but myths

Transmission vectors are very well understood and I do acknowledge some health departments are somewhat hysterical with regards to HIV never ruling anything out much to the disservice of the public.  Acupuncture needles are not hollow & they lack a reservoir unlike as example a syringe or hollow needle would have where HIV-infected blood can be stored.

Theoretically, to infect someone with an acupuncture needle it would have to be reused as in immediately whilst covered in fresh blood or fluids with sufficient HIV.  They did not pull it out of one person lying next to you and stick you with it immediately covered in blood, it simply did not happen.

Everyone's journey in life is their own, I wish you all the best with yours however, the speculation & posting about "acupuncture" as a vector ends.

Best, Jim
« Last Edit: September 06, 2019, 08:06:33 pm by Jim Allen »
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Offline Machopeful

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #46 on: September 06, 2019, 09:01:57 pm »
Jim,

I appreciate your passion around this, but at this point sexual partners have been ruled out completely. I acknowledge the stars had to align for me to have been infected. Based on conversations with numerous health professionals including researchers, doctors and health officials, acupuncture has been identified as a possibility. The most likely of which is a drop of blood being in a guide used in acupuncture.  This could even negate the use of sterile or new needles.  These are hollow tubes which acupuncture needles are inserted through. This would protect a drop of blood from full exposure to air and light and significantly increase the time the virus could survive. Once the investigation concludes, this will either be confirmed or ruled out.

If we completely rule out acupuncture (again something experts have not done), thereís no logical explanation for exposure. I did have a colonoscopy in late May, but at that time I already had a rash on my palm that went away after starting treatment.

I am well aware of the science surrounding HIV. I myself am a scientist with multiple graduate degrees. Iím not trying to be alarmist, but these are the facts of my situation.
« Last Edit: September 06, 2019, 09:04:24 pm by Machopeful »

Offline Ptrk3

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #47 on: September 06, 2019, 09:41:53 pm »
Machopeful:  I, too, wish you well and am very sorry that the transmission route of your infection is of deep concern to you.

However, I don't know how fruitful it is for you to continue this quest for long, short of some clear unusual transmission route coming to light, one that would withstand scientific scrutiny, etc.  Otherwise, you may endlessly be on a quest to prove a negative.

There is no such thing as "safe sex," only safer sex.  Though you write that you have always practiced safer sex, is it not a possibility that, remote as it may seem, a condom failed, or that, despite your safer sex practice, that you became infected through a sexual route (perhaps during your threesome in January 2019, if I understand your first posting)?

I don't know, of course, but it seems, as a matter of chance, that a sexual route (despite safer sex practice), is more likely than some of the other scenarios you envision, especially these days.

My point is, perhaps it is better for you to concentrate on the present and future:  adhering to your regimen and staying healthy.

Best wishes to you and your partner.

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Offline Machopeful

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #48 on: September 06, 2019, 10:01:22 pm »
There is no such thing as "safe sex," only safer sex.  Though you write that you have always practiced safer sex, is it not a possibility that, remote as it may seem, a condom failed, or that, despite your safer sex practice, that you became infected through a sexual route (perhaps during your threesome in January 2019, if I understand your first posting)?

If one of them were positive now this would be a possibility, but that is not the case. So unless someone can transmit the virus and consistently test negative using the 4th generation test, sexual transmission in my situation has been ruled out. This is the very first thing the health department did in the investigation.
« Last Edit: September 06, 2019, 10:19:59 pm by Machopeful »

Offline Jim Allen

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Re: Positive with No Real Explanation: only oral or acupuncture
« Reply #49 on: September 07, 2019, 01:07:53 am »
Jim,

I appreciate your passion around this, but at this point sexual partners have been ruled out completely. I acknowledge the stars had to align for me to have been infected. Based on conversations with numerous health professionals including researchers, doctors and health officials, acupuncture has been identified as a possibility. The most likely of which is a drop of blood being in a guide used in acupuncture.  This could even negate the use of sterile or new needles.  These are hollow tubes which acupuncture needles are inserted through. This would protect a drop of blood from full exposure to air and light and significantly increase the time the virus could survive. Once the investigation concludes, this will either be confirmed or ruled out.

If we completely rule out acupuncture (again something experts have not done), thereís no logical explanation for exposure. I did have a colonoscopy in late May, but at that time I already had a rash on my palm that went away after starting treatment.

I am well aware of the science surrounding HIV. I myself am a scientist with multiple graduate degrees. Iím not trying to be alarmist, but these are the facts of my situation.


Hiya,

Yeah, guided by a hollow tube would not change this.

Look I've met health officials etc that will not even rule out shaking hands or sharing toilet seats. Thankfully, this does not make it factual or even remotely possible and plenty do know better.

Anyhow, To be blunt personlly I don't care how anyone became poz neither do I plan to debate this. There is a level BS about immaculate conception we tolerate from newbies on these topics for good reason however you have now reached it.

Let me be clear the only choice (opportunity) being presented to you here at this stage is to simply drop the topic so you can continue as a member to gain support from the others when it comes to living with HIV & Treatment etc, as said it's not always an easy path and the people here are very supportive.

Jim
« Last Edit: September 07, 2019, 04:40:12 am by Jim Allen »
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