plasma--eyedrops made out of your own blood question

[xrayspex]

I was diagnosed with sjogrens a year ago and have dry eye, recurrent corneal abrasions......I cannot tolerate steroid eye drops or restasis etc I have mcs. My mainstream doc agreed to order me autologous tears, a serum made out of ones own blood that has been healing for some people with dry eye and autoimmune.They tested me for HIV, htlv and hepatitis before they gave them to me, no positives.

The first couple days I was excited because I felt a systemic reaction I thought of more energy. That isnt something I expected or has been in its description but not totally surprising since I got a systemic reaction from very weak steroid eye drops, it blocked my minute amount of gabapentin from working and caused headaches and tension. These serum drops havent seemed to cause headaches but I started to get insomnia again which is something the gabapentin had turned around since this spring and some tension and I dont know if this could tie in but a rootcanal that I had fixed last winter and had been better for months started to feel weird again, ear pain when sleeping and soreness at the tooth site, it was odd came out of blue, not terrible but a change and some of same symptoms before I got it fixed. I got suspicious and so went off the drops after a week on them. The 2nd day off of them I felt lethargy so I took them again but then felt tenser again and tooth symptoms increased so decided should give it more time off, plus my eyes feel drier than they were before I started them, not sure if its from the drops or a withdrawal from them.

Since this is so experimental and so much is clearly not known about our sort of illnesses I feel frustrted on how to proceed....it seems that I am going to be a bit more befuddled mentally until I get this serum trial behind me, the gabapentin isnt working as predictably as before (altho it was never perfect because of my mcs was better than post eye serum)

my question is, could those of you who are savvy about medicine and the theory behind treatments like autologous tears let me know please your theory on what could be going on here? could one's own plasma possibly act like a steroid or something in our body? do people wh take stem cells etc get weird reactions sometimes? I didnt do well on cheney's bison stuff the brief time I took it.

I dont know if I should just back off and take the drops cople times a week or write them off as failure. with the mcs I usually slowly start into news meds or supplements often quitting neumerous times til find tolerable dose , most of time no tolerable dose. I supposed if somethign is helfpul sometimes it has side fx if its powerful or could my blood have something in it that is being put back into my body and sgtirring up the dental infection again? its all quantum physics to me, the reason they said they tested for hiv etc (htlv was my idea)was just to safeguard their own lab workers not nec a concern of putting what u already have back in yr own body. After hearing NPR about physics and cia studying psychic phenomena on radio today i feel like its clear we are so in the dark on how all these things work.

 

[anciendaze]

First off, I feel confident this is not a psychic phenomenon.

Second, while I don't know exactly what is going on with autologous serum eye drops, I strongly suspect it involves immune cells extracted from your blood, and these may be infected themselves. A model with a retroviral infection would predict that culturing infected immune cells would likely activate provirus. This need not be the only model. An infection by herpes group viruses would not involve inserted provirus, but these viruses themselves have an inherent ability to lie latent, and the laboratory procedure could well activate them.

Getting down to individual treatment recommendations is really beyond me. What I can say is what I've told other people with weird reactions to medication: start low and titrate dose up. Back off when you get an adverse reaction. It may be necessary to try several times before you write off a promising treatment as a failure. (Think of desensitization for an allergy.)

This is not the first time I've heard about a connection between a root canal, autoimmune disorders and MCS. There are other problems, including bacterial infections in the sinuses, which can follow dental problems. About 25% of persistent sinus infections start out this way. These are not always trivial, even if doctors tend to think so, because most are. People can even die from sinus infections if these are not treated properly, and the infection becomes treatment resistant. It can enter bone which is only a thin barrier separating sinuses from the brain. It can even drain into the lungs during sleep, starting a pulmonary infection. Several aspects of your description make me wonder if this is going on. For reassurance I hasten to add that fatal cases can typically be traced back years during which they are given inadequate treatment. During this period a single effective treatment can stop them.

My own hypotheses on autoimmune disorders all involve an initial viral infection. This is far from the end of the matter. The strong immune response is often against another pathogen, like bacteria or fungi. Treatment of these superinfections may reduce the strength of an inappropriate response. Treatment of an opportunistic infection by a common virus may also benefit the patient.

 

[alex3619]

Hi xrayspecs,

http://www.ocularsurface.com/graphics/PDFs/AutologousSerumTears7-02-02.pdf
"There are several proteinaceous and non-proteinaceous factors in
the tears that are essential to maintain the normal epithelial health. For example, the tears
contain essential components such as epidermal growth factor (EGF)3, vitamin A4, TGF-
β{782}, fibronectin5, and others cytokines6. These factors regulate the proliferation,
differentiation and maturation of the ocular surface epithelia. In patients with very severe
aqueous tear deficiency secondary to lacrimal gland dysfunction, these factors are
severely depleted, and thus may explain in part the difficulty of the ocular surface to be
kept in a healthy state. Because these factors are also present in the serum 7, many studies
shown below have formulated artificial tears by diluting patient’s autologous serum with
saline solution to treat a number of ocular surface diseases."

These serum tears are created by removing all cells and most solid components. However fluid components remain including hormones. In an otherwise healthy person, this will result in a healthy product. In someone who has hormones or other factors in the serum that are atypical, this might result in problems. It is very hard to say what problems, I can only say its possible. Which problems would depend on atypical factors in the blood.

So its highly unlikely to be bacterial, and somewhat unlikely to be viral. My guess is hormones, enzymes or toxic chemicals if there is a problem. Creating such serum from sick people very likely includes abnormal chemicals in the serum. I am not sure its a good idea in an illness in which so very little is understood of the pathophysiology.

Now if you had an healthy identical twin then I would suggest gettting the tears made from their blood, but otherwise its sufficiently problematic that I would discuss this with your medical practitioners next time you see them.

I can't give a lot of advice on this issue. Far too much is unknown. It is also possible that this is just a starting period, and they may work better later. However from a very brief look the success rate is only 60% - it may simply be that this is not the therapy for you. Again, see your doctor.

You might like to read:
http://www.jkscience.org/archive/vol113/2- Review Article Autologous Serum.pdf

This article mentions some similar alternative products, with even higher success rates:
http://www.revoptom.com/content/c/30753/

Bye, Alex

 

[xrayspex]

Anciendaze and Alex, thanks so much for your thoughts, I respect both of your opinions...........food for thought. But it sounds like you guys agree that from someone who has a poorly understood illness its hard to say what comes out of my blood and it could be contraindicated. My doc has no clue, I told him about it and he thought it sounded fair to try, but he also has mixed feelings on what he thinks CFS is.

trial and error.............sigh so tedious and often risky eh

 

[spacee]

Hello All, I tend to lean toward Anciendaze only because I don't understand much of Alex's hypothesis (which
doesn't meant it is in error, just don't understand it.)

And, exactly, who can saw what comes out of our blood. Scary thought there. And your doc is light years ahead
of anything done in this area. Mikie has had good results from the peptide injections down in Ft. Myers but getting
there every month for 10 months would be out of the question. The thought of more energy would be so exciting!
And disappointing if taken away. BTW, I am not posting at PH these days but if you want Mikie's email, I have it.

Anciendaze, having an identical twin, I can say that I would not want any of her blood though it could be "cleaner"
than mine. She is showing other oddities that I would not like to add to my mix of all things CFS/autoimmune, etc.
Hashimoto's for one.

The dropping back and starting over slower might be good. I am having a difficult time with sound and light (wearing
headphones to block sound. Finally, tried xanax and it seems to help without putting me to sleep. Klonopin puts
me to sleep no matter how small the dose. Certainly hoping something helps!

 

[alex3619]

trial and error.............sigh so tedious and often risky eh

Hi xrayspex, rule22:
"22. Most treatments for ME are lemons, they don't suit everyone - but you often wont know if it suits you until you suck it and see. If you see a soured look on my face you will know why."
http://forums.phoenixrising.me/index.php?entries/28-rules-of-thumb.941/

So many of us have learnt this one over the years.

Bye, Alex

 

[merylg]

Hi xrayspex, keep in mind that Gabapentin is associated with adverse effects to eyes. I was only taking 100 mg/day when I experienced a sudden pop behind my eyes & feeling of pressure in eyeballs, then sudden onset Dry Eyes (tests for Sjogren's negative). I WAS also taking sub-lingual B12 at the time and had high serum B12 levels.
The layer missing from my tear film is the lipid layer. The Dry Eye seems permanent though it fluctuates in severity from mild to severe. I am now unable to take any B12 without experiencing severe Dry Eye the following morning...where my eye-lids stick to the surface of my eye and my eyeballs feel small/shrunken. The pressures are at least low & not high. At least I have no signs of corneal ulceration.

I have to use expensive single use ampoules of lubricating eye drops due to MCS and needing to avoid preservatives. So far I have been able to tolerate Viscotears & Polygel. Cannot stand Lacrilube overnight so do not use it. Instead I wake up through the night & put drops in. Have tried taking Fish Oil at 3,000 mg/day. It seemed to help a bit, but hard to know as the condition fluctuates anyway.

Here's a link on Gabapentin side effects. Scroll to various Clinical Trials, Side Effects - Special Senses
http://www.drugs.com/Hpro/gabapentin.html

Your autologous serum drops would contain Gabapentin if you were on it at time of collection. The drops are also easily contaminated at time of preparation, or during use & storage.

 

[xrayspex]

Hey Meryl, thanks for weighing in. Yea, the more I think about it, it seems niave that I ever would have thought it would be a good idea to put MY blood back in me haha

The good news is I am on practically a homeopathic dose of gabapentin, less than 1/10 of 1ml a day usually, I have liquid form, but it has made a huge difference in cutting back my headaches. I think with mcs and cfs the trick is dose, anything can be poison in the wrong amount. That said I have had side effects even with that small amount but not too bad, one thing that persists though and is concerning me today is bruising, I get random weird bruises in unlikely spots. But I feel like I am at end of line of ideas on what to do to deal with pain and headaches if gaba doesnt work out. I hadnt noticed a lot of eye effects from my amount of neurontin, get more symptoms from the benadryl I take for sleep. But my eyes did start to puff up bigtime on those tears. The neurontin makes me look allergenic in a way as I get puffy a bit around the eyes but those serum drops made my eyes puffy 10x more tha nthe neurontin did after afew days on them.
I have had good luck with genteal gel drops no preservatives.

I have high b12 and do not tolerate extra b12 well, maybe your reaction to b12 holds a key to something.

Anciendaze I wanted to add to you....I probly shouldnt have added that part in about physics and psychic phenomena in my intro rant hah it enhances the crazy bias outsiders might hold.....but the show waS very interesting,based on research and the US govmt clearly has been interested at times...they also mentioned a book something like "how the hippies saved physics" I guess research had declined after the 40s 50s and got revived in 60s 70s in physics. but I was trying to get at how much we do not understand about how all the different energy systems really work, so much of what we do does seem like russian roulette.

 

[xrayspex]

anciendaze-also could you please expand on what you said--how/why you think this could happen :
"An infection by herpes group viruses would not involve inserted provirus, but these viruses themselves have an inherent ability to lie latent, and the laboratory procedure could well activate them. "

I don't have a conceptualization of the sciene behind this........if I did reintroduce something back into me in a more virulent way or something, is it too late, like did i set a process in motion, such as reinfect what was going on before successful root canal earlier this year or stimulate a latent virus, or could the mechasim be that the drops were starting to stimulate that stuff but if I stop it could go back to my pre-drop status, sort of like it was just a flare, nothing more....I suppose no one knows obviously but any conjecture?

 

[anciendaze]

Xrayspex: With some inside information on government investigation of far-out possibilities, like antigravity, I have no more faith in something because the U.S. government investigated it than I would if any other organization investigated. Classification serves purposes besides protecting valuable secrets. It also keeps important people from becoming the butt of public ridicule.

Would you believe anyone would build manned aircraft without landing gear? (Not seaplanes, those are another story.) Missiles guided by pigeons? Would you fund a project to get intelligence on the Soviet Union by snapping random photos from balloons drifting across the length of that country at 100,000 ft? (Not one single identifiable installation was ever pictured.) There are also some fairly amusing stories about what people were really doing when they accidentally started flying saucer stories. (Take one missile with defective guidance, a flatbed truck and a night visit to a Mexican cemetery, stir thoroughly and let rumors rise.) Even in daylight a simple story involving the world's fastest bulldozer and seismograph records can become a deep mystery, possibly related to crop circles, if the truth is especially embarrassing.

 

[anciendaze]

anciendaze-also could you please expand on what you said--how/why you think this could happen :
"An infection by herpes group viruses would not involve inserted provirus, but these viruses themselves have an inherent ability to lie latent, and the laboratory procedure could well activate them. "

I don't have a conceptualization of the sciene behind this........if I did reintroduce something back into me in a more virulent way or something, is it too late, like did i set a process in motion, such as reinfect what was going on before successful root canal earlier this year or stimulate a latent virus, or could the mechasim be that the drops were starting to stimulate that stuff but if I stop it could go back to my pre-drop status, sort of like it was just a flare, nothing more....I suppose no one knows obviously but any conjecture?

If the serum was carefully processed to eliminate cells that would eliminate one source of infection. It still might not be free of virions generated in the laboratory. Much more likely is the possibility of viral fragments or proteins generated during processing triggering an immune response in someone who was already hypersensitized.

Most healthy people have several herpes group viruses lying latent in immune cells in their bodies. It is virtually impossible to avoid them. They do not integrate their DNA into chromosomes, under normal circumstances. They introduce loops of DNA, plasmids, through pores in the nuclear membrane. These become episomes outside chromosomes which may or may not be transcribed into proteins by cellular machinery. It this is blocked they are said to be latent. Laboratory processing may remove this block, allowing the virus to become active in culture.

I doubt it is "too late" to recover. You had already been exposed to whatever pathogens produced the reaction before the drops were prepared. If the antigens can be reduced to a concentration where they do not trigger a full response it may be possible to desensitize you by slowly increasing dose. This is exactly what is done in many allergy treatments.

The immune system is both complex, having multiple components, and complicated. Most interactions with it are trial and error. Until we understand better this is a fact of life with which we must live. The idea of a "one size fits all" wonder drug for immune problems is handy for marketing purposes, but counter-productive in treatment.

 

[xrayspex]

anciendaze, haha I am cracking up at what you wrote about with UFO's etc. yea, again, what was I thinking, mentioning US govmt as if to give research credibility. At any rate, in spite of govmt involvement it was a fascinating segment on NPR yesterday on Physics research.

but thanks for the thoughts on what that lab process might involve with autologous tears. I had no idea about any of that, its all magic to me, but I guess the concepts you mention tie into all the fuss over xmrv research loosely. I really don't understand how new things are created in the lab potentially if they just start out with my blood and dont introduce new agents like lab mice etc I did better in sociology classes so avoided science in college, obviously......

 

[lansbergen]

The immune system is both complex, having multiple components, and complicated. Most interactions with it are trial and error. Until we understand better this is a fact of life with which we must live. The idea of a "one size fits all" wonder drug for immune problems is handy for marketing purposes, but counter-productive in treatment.

Well said.

 

[currer]

Hi Xrayspex,

Sorry to hear you are having such a rough time with all this.
I am not a doctor so cannot give you medical advice, but my reaction to your story is that your unpredictable reactions to tiny doses is familiar.

I went through a period of overreacting to tiny (I mean really tiny) doses of trycyclic drugs - like a bit of powder, extracted from a tablet, dissolved in a glass of water, then only some of that water drunk, - I could never calibrate the dose low enough for me not to react to it. (So I know what you mean about homeopathic doses)
And yet I used to be very tolerant of that class of drug.

My GP told me that these odd reactions and sensitivities are seen in HIV as well, and that they are possibly because the immune system is involved in the disease. Though to be frank, she wasnt interested at all in my difficulties.

The good part is that in my experience, these sensitivities come and go, and that things I used to be really sensitive to stop being a problem at another point in the illness. So if something does not work now, it may be tolerated by your body at a later time. There is always the possibility of improvement at a later stage.

As no-one knows what the disease mechanisms are in ME and as there is a wide range of illness among everyone on this site no-one can really be specific about what is happening in an individual case
It is trial and error. But dont loose hope that things can improve..

 

[Sherlock]

2 quick things, I haven't read the whole thread:

- wouldn't they need to have put some preservative in it, which might cause the problem?

- in the inside bottom corner of each eye is a duct for drainage - did you try the plugs that they can put in there (just with tweezers) to prevent absorption of whatever? They also keep eyes from drying, generally.

 

[xrayspex]

thanks currer and sherlock. Currer that has happend where my tolerance to something changes and I eventually find a tiny dose I can handle or vice versa, I didnt know that happens w HIV too, interesting.
and Sherlock the plugs are a good idea probably, I am just afraid to let them get in there and do it, it sounds gross for some reason, guess I should get more info, thanks.

 

[xrayspex]

I was reading this old thread again to remind me what side effects I had gotten when i tried autologous tears. Very interesting, i had forgotten that my teeth got effected. that went on for like 5-6 years after using the drops. It continued until I did frequency specific microcurrent for a while starting in spring 2017. I had gotten several teeth pulled after failed root canals/cracks were causing intense pain and triggering pain in rest of body between 2011-2017. Had some really miserable times on and off over those years, partly because I have neck problems similar to Jeff and Jen (but am more active than they could be pre-surgery) and getting dental work would set off neck for months...

knock on wood I don't know if dental woes behind me for long haul but been happy for the relative reprieve the last year and half from it being a major problem. I didn't recall that maybe getting autologous tears triggered it. Makes me think I shouldnt ever use my own stem cells if I was ever so inclined.