I have Lyme and PANDAS - which doesn't make sense

[LymeGreenPanda]

Thanks for replying, but that's all Greek to me!

Actually, Babesia Microti was positive (present) before heavy antibiotics (not the names you described) and negative while on them, and I learn a new set of results on Tuesday from IGeneX tests a couple weeks ago.

Ehrlichia Chaffeensis IgG (not IgM) is present, along with Borrelia Burgdorferi Plasmid, HHV4, HHV6, a few others and a partridge in a pear tree!

 

My liver was severely taxed by Metrinidozole, and I took Zithromax, Mepron, and quite a few others. I certainly haven't taken every chemical nor do I want to.

 

Drugs and operations are likely what killed my mother. On that note (if I haven't mentioned it already) I'm following the same pattern as my mother, so the odds that a tick bite is exclusively the reason for my illness seems unlikely to me. I was certainly bitten by ticks as a child in the Ozarks of Missouri and some ticks escaped my notice for as much as a few days. I was never taken to a doctor unless basically ordered to by the school (who could have called "Protective Services" or whatever existed in the 1970s and 1980s). Bullseye rash and serious illness? Probably. Treatment? Not until age 45!

 

What about this lump being related, and the general anesthesia?

[Missmom]

I think general anesthesia is tolerated by most pandas kids, I am not sure about Lyme.. Others can chime in. I have read to be careful with laughing gas that you get at the dentist though, I am having trouble thinking of the name of it right now though.

[3bmom]

My PANDAS son has tolerated anesthesia but was not under for a lengthy time. I agree with the comments from Rowingmom. Your innate immune system is creating chronic encephalitis due to dysfunction.

 

I have had chronic fatigue for 30 years and when I was given valcyclovir for shingles, (by the way same dose as my PANDAS DS) I felt the best in years!

 

Next step for both DS and myself is 23 and Me. Using epigenetics for personal vitamin supplementation along with Paleo non GMO diet will support the immune system to heal.

 

http://www.walshinstitute.org

 

This website has a lot of info how you may have had gene expression turned on from environmental factors showing similarity to your mother's health but not a genetic disorder.

[LymeGreenPanda]

I really appreciate the replies!

 

I don't recall the dose, but I was on high dose Valtex for maybe six months ~ year 2000, just before/after Biaxin in a similar course. It really messed with my head, which I don't think was the drug but Herheimer's reaction to the drug killing off something. Modified Paleo without GMO is a goal, but it is extremely difficult to implement living alone. Just taking care of myself and ADL (activities of daily living) is difficult enough. Without the chronic encephalitis (and whichever of my symptoms go with it) I'd be out of this fog, which would be an incredible improvement in my quality of life.

 

I leave to see the surgeon in a few hours. I guess they will test it in some ways - but do I let them biopsy it? I'm worried about it being made of some waste product from Lyme Disease that should not be punctured and allowed to circulate around my body.

 

"gene expression turned on from environmental factors" Interesting, I never thought of that. The similarity is quite strong; one difference being I refuse to take all the drugs and surgeries they did to her. If this lump is something the surgeon is not worried about (not cancer, not fluid waste, etc) then I'm leaving it alone. I don't care about it being there if it isn't a factor in my general health or a risk for deterioration.

 

As to anesthesia, I'll see if they can remove it (suck it out?) without general anesthesia, but will bring the notes from my previous general anesthesia, maybe they can use that as a reference of what not to do.

Edited March 31, 2014 by lymegreenpanda

[LymeGreenPanda]

Nothing makes sense. I'm sure someone reading this thread without a similar background would think I'm a hypochondriac! I searched the whole 'net for any association between Lyme and lipoma and while I did find some discussion, I found nothing conclusive.

 

Here's an update, not that it makes any sense to me:

* I went to see the surgeon as described, and his 'blind' response was to just remove it due to its size and potential recent growth. No testing done.

* a few weeks ago I had the surgery. The anesthesiologist was great. I gave him a page describing the previous time I went under, what they used, and that I tolerate pain and gore so not to put me under if at all possible. For once, he read the whole thing! He described some reasonable options, and he could have put me under without Opioids which seem to be what I can't tolerate. He would have used a benzo and proponol (what killed Michael Jackson only because no mechanical breathing was available where he was) which is supposed to be well tolerated and if I quit breathing their machine would have done it for me with no harm to me. I went through it with local only (lidocaine without epinephrin), felt most of it up to the level of being stung by a wasp, and just beared it so I wouldn't be drugged. I was hooked up in case, but he never administered anything though he monitored me closely and I said I can handle it, just keep going.

* I'm recovering in a normal manner. I found the surgery completely tolerable.

* They showed it to me in a jar after removal and it was not connected to my blood supply. Pathology report came back saying it was a lipoma of over 6x6x2cm; with no problems found. However, they did not culture it or test it in any way for infectious disease. At least a sample is stored 'forever' for future testing.

* Besides what I'm about to describe, absolutely nothing has changed in my condition as far as I can tell.

 

Now this is bizarre:

* I've had chronic diarrhea for years. Not sure when it started, but possibly late 2009 when my thyroid blew, hormones went out of whack, I started falling (orthostatic hypotension), lost strength, and this lipoma grew rapidly below my elbow (which is near/at a lymph node). I've had all kinds of tests, and no cause has been found.

* Since immediately after the surgery, I've become completely regular. In fact, yesterday I ate "all the wrong things" to induce food-intolerant diarrhea... and am still regular! It is now three weeks, and basically my body has to learn to tolerate 'normal' not to get too specific.

* To address the most obvious answer: I didn't take even one Narcotic/Opiate. In fact, I haven't taken a pain pill of any sort for so long that the ibuprophen in my cabinet is unopened and expired by a few months!

 

Here's why I'm writing:

* How can removing a lipoma fix my digestion? It makes absolutely no sense to me! Perhaps it is just coincidence, as I've been on a serious probiotic regimen for months. Maybe 'trauma of surgery' had a side-effect of halting some process, and it will go back to the way it was in a while.

* Maybe now some waste-product is able to build up in my arm again, and is no longer being routed to my digestion?

* What tests could they do to that sample that they now have stored, in order to better figure out what is going on with my systemic conditions?

* What would determine (particularly prevent) additional lumps to grow in my body?

* Okay, let's suppose "Pathology" accurately reported adipose tissue (fat), and called it a lipoma. Might there be something else within that fat?

 

Sorry, I'm only asking here because I already asked my doctors and searched for similar patterns online - and have come up empty. Besides, perhaps someone will benefit from my information on this forum at some point in the future.

[Missmom]

Just speculating, maybe the growth along with all of your symptoms has created so much anxiety in you that you were constantly having soft stools. Now that you know that the growth was nothing to be as worried about and it has relieved some anxiety this has allowed your body to regulate somewhat. I just say this as every time I have a stressful medical test or situation I seem to be running to the bathroom. ibs....

[LymeGreenPanda]

That is a reasonal position to take based on the information that I've given. I do have significant anxiety, but (to follow your logic) it took over two weeks from the surgery to get the Pathology report yet my diarrhea began clearing up immediately after the surgery, when I did not yet know the results. The stool change since the surgery has been surprising; well beyond any change in anxiety.

 

Put another way, my anxiety varies, but my stool does not follow the same schedule. I've only been regular for a while after each cleanse with Colyte; prescribed a few times before and since a colonoscopy which failed to diagnose the chronic diarrhea.

 

PS: You mentioned "soft stool", so I must be more precise: Explosive liquid diarrhea every day, requiring staying home until at least noon every day so I don't have an accident, but still stain my shorts; and if an appointment forces me to go somewhere sooner, I fast for a couple days before and until the appointment (or project, such as moving) is over. About a year ago, I even bought a home-colonics system.

 

Contrast that to now: completely formed normal "stool" that my internal muscles are having to adjust to coping with. Perhaps I have a reprieve because of some pattern I've not recognized: maybe the huge amount of lidocaine, maybe the anxiety and pain on the operating table. I don't know. I didn't take a single antibiotic or narcotic removing this rather large growth, as some such drug could cause a temporary change.

Edited May 31, 2014 by lymegreenpanda

[LymeGreenPanda]

Found this old thread shows up on first page of Google search results of a couple key words, so figured it should be updated:

Due to a head-on car crash shortly after this thread (100% on other driver) I've had to focus on other things. A couple years of P.T. and continued effort and my injuries are no longer as significant, though still permanent.

Digestion went south again, so that was only a short reprieve after surgery, then in November 2015 collapsed and have been on a liquid diet since (milk, milk components, cranberry juice alternately - not much else).  Since found I can digest potatoes (long chains of glucose, seems my best tolerated carb by far) egg whites (pure albumin, same protein as in our blood, figure that takes no digestion), butter, and Avocado oil. (must eat fat to feed brain)  At least I'm not starving, but skinny. One year of the liquid diet avoiding most foods cleared Klebsiella Pneumonia.  Not sure how much that helped, but diarrhea doesn't smell like death any more, and is rarer and not explosive. (though I also don't eat anything that upsets my system, use 'shallow' colonics any time I have a problem, so causation is hard to pinpoint)  Figured out I had Bile Acid Diarrhea which can be avoided by colonics any time my colon starts to bubble (those are secondary bile acids building up and getting ready to cause problems, I stop it before it starts).

Been focusing on hormonal issues, and T injections have gone up and I keep needing more. Now I'm suffering enough blood problems and complete debility that I qualify for a nurse, and get frequent blood tests and phlebotomy to keep my red blood cells from being excess. Told to stay on dose of T that left me walking with a cane, so figured 'forget that' and cheated my T dose higher and health returned; now I'm relatively active again for a few hours a day. That may just be a Band-Aid, time will tell. By having such high dose testosterone, along with 300mg Armour, I have my pituitary and endocrine system pretty much shut off.  Two brain MRI's this year showed underactive pituitary (can be through feedback loop due to having nothing to produce, or problem in first place?) but no abnormalities. Anything else endocrine I can shut off? Valium may indirectly be shutting off my adrenals, or keeping them from producing as much.  Anyone know a more direct approach to that end?

My immunity is high; I absolutely never get sick from normal stuff though I also take great pains to avoid contamination which could also be the cause.

PANDAS - with high anti-DNase B, OCD tendencies, anxiety with panic - I'm completely isolated. Considering even higher dose of benzodiazepines than US doctors prescribe, but have to get a doctor from another country to get that.  Any alternatives?  Went through a few years of talk therapy which felt like a waste of time.  Cannot take SSRI's, Tricyclics, nor any other serotogenic(?) drugs.  Serotonin is likely excess in my gut as when last tested. Not keen on a spinal tap.  Clonidine helps for a while but loses effectiveness.  On it again, and can't tell any difference; maybe better concentration.

LYME - massive course of antibiotics, antimicrobials, etc; left my gut imbalanced but not necessarily helped. Haven't put any effort into this subject in a few years. A university hospital has stalled all progress.

CFIDS - all markers are there, but I put no effort toward that idea, either. Socially it is better to just say I can't do much in a day and get exhausted because of my endocrine problems and leave it at that.  Alliopaths never helped with it, support group was just a complaint circle so quit that long ago.

Hashimoto's - As I refuse to lower my dose, my thyroid is simply shut down.  No symptoms as far as I know.  My thyroid seems completely shut off and I don't have any swings.

This message is just informative, not really asking any questions.  Just seemed like if Google puts this up front on a common search, I should update it.  Your input is most welcome.