MichaelTampa

Given she has a lyme rash and lyme symptoms, it is very likely lyme. Not sure how much you know about the politics of lyme, but understand that you are going to continue to get brushed off by everybody regarding possible lyme until you actually go to a doctor who specializes in lyme disease. Maybe someone here can recommend one in your area, or you might get a list of ones in your area from ilads.org. A neurologist is not going to be of any help unless you want to give up looking for the actual cause and just dispense serious drugs with serious consequences on the off chance that it might help symptoms a little bit here and there. If more serious symptoms were involved, a neurologist for symptoms management might make more sense, but doesn't sound like it does at this point.

PCR testing is what I was thinking about. I do not know enough about the science behind the test but wonder if one can essentially get false positives based on the garbage DNA picked up through the millennium. bill Oh, I see, interesting thought. Guess that depends on how specific those tests really are.

Perhaps many of us do. Note the article talks about finding the bug in the genes, and it is what they say that having an infection (not just lyme) can change your genes. Testing is often antibodies, but sometimes PCR (looking for the actual bug). So I don't think it would directly impact testing. But the body could decide to not fight the bugs as much with gene changes, and that could show up in testing in terms of not finding antibodies because the body is not making them. Many of population could be infected even though not having severe (or perhaps any) symptoms. Here I will note one study of about 800 people (not a really large group) that had about 40% positive on band 41. People keep trying to make up theories that it is really a reaction to something else, largely without evidence but just basically assuming if 40% have that reaction it can't be real because lyme disease is uncommon blah blah blah, but it could also largely be that 40% of people have at least a small amount of lyme bug in them (or at least did so recently enough that igg or igm antibodies show up in testing). This wouldn't mean all 40% are sick.

Interesting, thanks for sharing, followed some of it anyway.

My doc does things a little different, something that goes in the arm only for about an inch inside there, and it was used once daily, flushed before/after use in the morning and also flushed in the each evening. Then after a week it is taken out and a new one is inserted. The nurses thought it was butchery to keep having one inserted once a week, but the doc thought the risk of the other way developing infections was too great. This is just how this doc does things, nothing to do with me in particular. The insertion process took about 5-10 minutes (mostly prep and then taping it down, actual insertion, 15 seconds), no anesthesia was used, definitely felt worse than drawing blood but was not horrific, at least to me.

I found the article interest also. But, I had already heard that this bug was likely around much closer to the way beginning of earth, so I was much more surprised that they would have bothered to find this rather than that it was there.

The "doesn't matter the cause, treatment is the same", is for those people content to live with handing over drugs to manage symptoms. That's how that psycho doctor you saw sees the world, and sounds like that's not how you see it, and frankly that's not how most of us on here would look at things. Your story has enough pretty clear evidence pointing to the fact that this is infection and/or autoimmune related (vaccine, CamK, NAC). I can't imagine what "regular OCD" is, but I guess that's for those that think they can have OCD with no actual cause. I can't believe in that. There is a cause. Drugs can help manage symptoms, even while looking for a real cause and longer/better solution. Of course the SSRI's are pretty significant drugs, not without their risks and problems, for sure. From what you describe, sounds like something PANDAS-like is going on there. There may be another step or two you can take down the PANDAS route, and that may be worth exploring. Perhaps, though, there is more than PANDAS going on ... lyme or viruses. The NAC is a clue, I think. NAC is helpful for a number of things, one prominent thing though is with making glutathione which helps the immune system and detoxing. When NAC helps with OCD, there is a reason it helps with OCD beyond that it helps with OCD, the OCD has a cause (such as that neurotoxins created by an active infection are causing the neurological system to go haywire) and it is helping with that cause. I think looking deeper at hormones/endocrine system and at a full list of possible infections could be useful.

I would be surprised if temperature spoils it, but really I am not knowledgable or experienced on that topic.

My goodness, this does sound like a serious problem. Are you feeling starving, are you eating until you feel full? I used to eat very large meals even though I was very skinny. Eventually I found out I had a lot of food allergies. They were treated with NAET and I started gaining weight. I felt very hungry, so was eating until I felt full, it was just a lot of food, and after food allergies were treated, I had to start eating less. Don't know how much of this matches your situation, but thought I should mention it. Other possibilities I wonder about here are parasites, fungus/candida/yeast. I don't think blood/stool tests for these things are reliable, and would put much more trust in energy testing for these things. Sometimes cancer will cause severe weight loss too. I have low b.p. too, not like yours, but it has been stuck on 100/60 for years, and a relatively new doc just today told me this can be a sign of adrenals being severely fatigued and underperforming. Just some thoughts here of things to look into. Hoping you can find a good doc to really find out what's going on!

One thing I want to add is that with the most frequent testing done for lyme, such as western blot, what is being tested is antibodies. If someone has had it for a long time, they may be so weak they are not making antibodies at a level enough to be detected by the test. Another things is that lyme causes autoimmunity, in part because, over time, it will change its own DNA and the person's DNA such that the immune system may not be able to make antibodies for the standard lyme strain being tested for. Instead, the immune system may be making antibodies for what lyme has morphed into, or for what lyme has programmed it to make antibodies for.

Wow! My first appt was $575 with follow-ups being $175.

Just wanted to point out that some people in the lyme disease community believe that MS is always or almost always a result of lyme disease. I particularly wonder in that I was diagnosed with TS before I considered if maybe I had PANDAS and then ultimately realized I had lyme disease, so I know first-hand how lyme can be misdiagnosed as TS. As lyme disease is infectious, it makes me wonder if you have considered if you have lyme disease in your family.

I have some memory of hearing of this as a heavy metal problem, which wouldn't mean that it's not a lyme symptom, as you will have a heavy metal problem if you have lyme long enough untreated. But, I think you could have that from heavy metals without lyme.

Kind of amazing, eh!?

Just want to say, I have tried ACS brand now, and do find it stronger than SilverBiotics, as Dawn suggested.

Don't really know if that's normal or not, if that was requested for me, I didn't hear about it. I do submit my claims myself, but of course the insurance company can ask the doc for what they will, and submitting the claim includes signing something to give them the right to get the info. I do wonder if they could/would use it to deny prescription drugs and the like, that they otherwise wouldn't. Wish I had some advice, it does look like something to be careful about, but don't know what I'd do.

You could have bartonella too, and it could just be a false negative on the test result. False negatives on bartonella tests are fairly common.

I have had experiences of outside/exercising and really was terrible for the day or so after. For me it really seems just the pure exercise has played a role and just the pure heat has also, so really both. Very frustrating every time to think you can do things and then realize again how sick you are!

Yes, I was back to work today. I really did need the day of the procedure and the two full days following the procedure as recovery. There was disrupted sleep and headaches and extra naps needed and sore groin from where they inserted the equipment and lots and lots of itching for that time. But after that, it has been all good, some notable improvements. Things still settling in and fluctuating a little. Plan to give a 1-week update in a couple days, hope to have a better sense of where things are after that.

This stuff has been around at least for centuries, probably for millions of years. The feds did do research with lyme several decades ago on Plum Island which is between Long Island and Connecticut, which almost certainly led to the outbreak in Lyme Connecticut and surrounding areas (New York state, etc.) in the 1960's-1970's. But they didn't invent the stuff, it's been around a long time.

My understanding, at least, would be that ART would never really say that something is gone or that someone is cured. It may pick up that a certain bug is or is not at the heart of a current disregulation in energy flow, it may pick up that a certain substance would or would not help that situation. A skilled ART practitioner should be able to do that well enough most of the time. An example from my situation. A few months ago I reached the point where it appeared that abx were no longer helpful. I was hoping this meant that I had the bugs under control. After 1 month of being off them, I was starting to feel pretty well, and I would not have been surprised if labwork said I was healthy. After being off abx for a couple months, bloodwork and symptoms were showing that this was not the case. I still energy test that abx is not the way to go, but over time we found some supplements that are being helpful, at least a little bit. I went to two new docs looking for treatments--one does neural therapy and one does ozone therapy. One uses labwork to diagnose issues, the other uses ART. As the order turned out, I went to the labwork guy first, the ART guy second. The ART guy diagnosed Epstein Barr virus was a priority to treat and gave me some things to get started. The labwork guy's blood results eventually came back, and showed problems with Epstein Barr and a couple other well-known viruses, so well-known I have to believe the ART guy tested for these as well, but they didn't come up. So, those things were around, and I was making some antibodies for them, but they didn't come up with ART testing. They were not wreaking havoc at that time like Epstein Barr was. Now, if we treat Epstein Barr in a way that doesn't treat the other ones, there is certainly a chance one day the other ones will be an issue, particularly if we can't get my immune system and hormones and all that important stuff functioning properly.

Okay, I am back from the procedure. It went pretty well. All in all, the procedure itself was a lot less unpleasant than I expected, not much to it, thanks I imagine to the painkillers and anxiety meds that are standard for the procedure. Left jugular was 80% blocked and blockage was reduced to 20%. Right jugular was 70% blocked and blockage was reduced to 40%. Was told going in, not to expect 0% blockage, and also to understand that is not needed for perfectly healthy function. So the left jugular result is excellent. The right jugular result is somewhere in the "pretty good" or "very good" range. As far as will it help with symptoms, we will see. Too early now for sure, as I am just transitioning from having the painkillers and anxiety meds in the system to being eliminated. Now the groin, where they go in, is starting to hurt. I think it will be tended for a few days. Head was dizzy/lightheaded for a while, and was feeling a bit loopy, now starting to feel a bit normal other than the pain from any kind of leg movement. So, turned out okay, now let's see over time if it was worthwhile. Thanks for all the well-wishes and prayers!

Wow, that's a great milestone!

Not familiar with that brand. Had tried Deseret Biologics brand, and tested as not that good, could only take very small amounts like 1/2 teaspoon a day. Just recently was given SilverBiotics brand from a different doc, and it seems better. I am taking about 4 Tablespoons a day, spread thoroughout at 1 Tblspn at a time. Both brands had 50 mcg silver per teaspon. So I assume this brand is much better. I need much more probiotics. I have noticed the bad bacteria causes this need for me, perhaps from the yeast being fed by this. I am taking this more for epstein-barr virus, but it is pretty broad spectrum, and I think it will kill good bacteria as well. I think this can be helpful stuff, but seems to matter what brand, at least for me. Sorry, no experience with your brand.

For most people it is outpatient, it sounds like if there are some unexpected issues a stay in the hospital might be required. In most cases, it is a couple/few days off work and then back to normal routine (or hopefully a better routine). I am expecting to return to work on Monday. Thank you everybody! I'll give a report as soon as I'm able.