220 replies to this topic

[Lufega]

The needle was normal size. It still hurt like hell though, but I took it like a man! No tears I tell ya. lol

I saw the pathologist today. Results are negative for hemochromatosis. They could not perform the copper storage test because they're missing a reagent so I haven't ruled out wilson's disease. I have to find a pathology lab in the states that will do it. Aside from that, the liver biopsy looked normal. There was no fibrosis or necrosis evident.

There was however, hydropic change in the hepatocytes that was evident. That means the liver cells are swollen with water. It's a reversible situation if the cause is treated in time. The Doctor mentioned that parasites can do this among other things. Someone in this thread mentioned parasites as a possible differentials. That was interesting to hear. However, we do not know what the mystery cause is. All in all, the biopsy wasn't a waste since it did show signs that "something" is going there. The copper test is still pending.

I've been using NAC and sylimarin for quite sometime. Also, I use taurine regularly and artichoke extract which promote bile flow and cleanses the liver. I suspect this played a role in keeping my liver healthy.

[Lufega]

I sent the liver biopsy to the States to test for copper storage since that test is not available here. I'm getting the test done by Mayo lab. I hope this will close this chapter soon.

I'm also preparing the Igenex Lyme test. I'll test for the western blot Igg/IGm as well as Bartonella. I have no idea why I've been putting this off so long. I blame it on anxiety. How do they report back results? To you Doctor, Email, mail?

Edited by Lufega, 29 April 2009 - 01:37 PM.

[FunkOdyssey]

They send the report to your doctor.

[nameless]

Have you been checked for parasites? Not sure how they do that exactly, or what parasites you could have... I guess a stool + blood test.

Are the bartonella + babesia Igenex tests much better that local lab testing? I know their WB is better, but curious about co-infections.

[Lufega]

Nameless,

That I know of, local labs don't test for any of that stuff. Talking to them about most infectious diseases is almost like talking to aliens. I will do a serial stool test to rule out parasites. That's a big differential for me.

I sent the lyme sample to Igenex...I'm crossing my fingers.

Today I went in for a stress test and 24 hour cardiac holster which I'm wearing now. The stress test was normal except for a few variants, such as a non-changing diastolic pressure with exercise. Hmmmmm....

I also saw the Endocrinologist. Now that I think about it, this should have been the first person to see. But that's me....complicated. He almost instantly concluded adrenal insufficiency based on my symptoms. He's also curious about the hypercalcemia and low sodium in the face of normal lab values for the known causes. All in all today was successful and I put checks on many important tasks that were pending.

[nameless]

That's good you are making progress there.

I asked about the Igenex co-infections stuff as I am going to get the same sorts of tests... well, actually, I have already, but my doctor sent my blood to local labs first, since insurance pays for them. I'm hoping local labs are good enough for co-infections, as Igenex can get pricey there. Depending on results, I would then have to get my Western Blot through Igenex after being on Doxy for several weeks.

A tip for the holter, which you probably can figure out on your own anyway -- before sleeping, detach strap, any tape or adhesive (if they used that), carefully put the holter to side of bed, leaving connections hooked up. It's a lot easier to sleep that way without the holter device so close to the body. I know when I first had a holter years ago, they used an old model, and taped the entire thing to me with what felt like masking tape -- very difficult to sleep that way.

[Lufega]

That's good you are making progress there.

I asked about the Igenex co-infections stuff as I am going to get the same sorts of tests... well, actually, I have already, but my doctor sent my blood to local labs first, since insurance pays for them. I'm hoping local labs are good enough for co-infections, as Igenex can get pricey there. Depending on results, I would then have to get my Western Blot through Igenex after being on Doxy for several weeks.

A tip for the holter, which you probably can figure out on your own anyway -- before sleeping, detach strap, any tape or adhesive (if they used that), carefully put the holter to side of bed, leaving connections hooked up. It's a lot easier to sleep that way without the holter device so close to the body. I know when I first had a holter years ago, they used an old model, and taped the entire thing to me with what felt like masking tape -- very difficult to sleep that way.

I would have tested other co-infections with Igenex, but you're so right, they do get kinda pricy. I only did a one week course of Doxy at 600 mg per day but over the years I've done many courses of antibiotics for other reasons so I'm hoping I'm covered. I just couldn't wait any longer!

Thanks for the holster tip. I was planning on sleeping with it but your idea sounds a lot more appealing.

[nameless]

The lyme doctor I saw said it didn't necessarily matter if a patient received antibiotics before getting the Western Blot. He said it may increase sensitivity somewhat, but he didn't really expect it to make a ton of difference.

600mg Doxy seems like a big dose. I'm on 200mg and not really tolerating it as well as I hoped. I think 600mg would sorta kill me right now.

[Lufega]

I said before that I didn't feel anything while taking Doxy. I think I was wrong, very wrong. If I remember correctly, it while WHILE on doxy that things went downhill for me. I started having breathing difficulty and heart palpitation again, which I had not had in years... This is what finally led me to start seeing Doctors.

[k10]

You should be getting your Igenex results soon, very curious to see the results.

[Lufega]

Good timing K10. My results were ready weeks ago but it took me this long to actually get them. A total nightmare.

The quatitative liver copper assay came back negative. My results was 27, the range is 10 - 35. So I do not have Wilson's disease.

-------------------------------------------------------------------------

B Henselae antibody IgM and IgG Negative.

---------------------

The result for Lyme said negative but I understand that if even one band is positive, you have Lyme. I hope I am wrong.

Igenex IFA, B. Burdorferi < 1:40 Titer -- Negative < 1:40.

Igenex Western Blot

IGG

Band 41 was positive with two stars ++
Band 31 and 39 were Indeterminate but most like means positive...or heading that way.

IGM

Band 30 was positive with one star +
Band 41 was Indeterminate

I can't begin to express how I feel right now. I might start LDN and retest in a few months just to be sure. That aside, I don't know what course to take...if these results point to a active infection.

Some info. about the bands that concern me:

30 unknown; probably an outer surface protein; common in European and one California strain - Has cross-reactivity with several different types
of viruses

31 outer surface protein A (OspA), specific for Bb - Has cross-reactivity with several different types of viruses

39 is a major protein of Bb flagellin; specific for Bb

41 flagellin protein of all spirochetes; this is usually the first to appear after a spirochete infection but is NOT specific to Lyme

Edited by Lufega, 04 June 2009 - 05:20 AM.

[k10]

You have the exact same IGG results as me. I have a european strain of borrelia, either borrelia garinii or borrelia afzelii (both came back as positive for me from another lab so not sure which strain), the european strains tend to cause more neurological type symptoms than the north american species.

But yeah it looks like lyme to me. If you want further assurance that it is lyme, you can phone Igenex up and ask them to do a "C6 antibody test" on the blood sample they already have there (they keep it for 6 months after collection), and if that is positive you can be sure as hell that you have an active infection.

[FunkOdyssey]

Might be positive, those are some "on-the-fence" kind of results. I would experiment with antibiotics (not doxycycline since that did not seem to do anything for you) and see what happens.

If you have no response good or bad from a variety of lyme-targeting antibiotics then I would rule it out. I would suggest tinidazole or metronidazole if you want to really stir the pot for a response.

Edited by FunkOdyssey, 04 June 2009 - 09:16 PM.

[nameless]

How reliable is PCR testing? I read it's hard to catch it via PCR, but if it does, it's usually positive. Maybe he should get a PCR test added, or is it sort of worthless? There was also that immune/killer cell test from Labcorp, which I forgot the name to...

Lufega: Did you test for other co-infections? Maybe use a local lab for other tick things, (since Igenex gets pricey)? Worth getting everything checked, I'd think, just to be safe.

Edited by nameless, 04 June 2009 - 09:29 PM.

[Lufega]

I have a working diagnosis so far. Congenital alpha-1-antitrypsin deficiency and Dysautonomia. These explain many of my symptoms but not all. The cause of both remains unknown and I still highly suspect an infectious origin that is depleting my body of essential vitamins and minerals.

I added Manganese, 20 mg on alternate days to my start and It has been a blessing. Manganese is more important than I realized and all the spook about its toxicity only really applies to environmental and work related exposure, not to dietary or supplemental doses. Only in infants using Soy, which increases absorption, have there been studies indicating toxic accumulation in the brain. The only circumstance where supplemental Mn can be toxic is in patients with liver failure. The majority of Mn is excreted in the bile. Other substances can be toxic in disease such as potassium and magnesium in kidney failure but under normal circumstances, it isn't much concern. We've been scared into thinking Mn is dangerous, much like what's happening with vitamin D and magnesium but the more I research the more I find this is not true.

In dysautonomia, like in myasthenia gravis, there is a dysfunction of the cholinergic system. This causes the parasympathetic system to fail, allowing the sympathetic to take over. The master neurotransmitter here is acetylcholine, which manganese is directly required for its production. Manganese is also needed to make dopamine and I can feel this working each time I dose. Mn is also SUPER important for connective tissue. It's needed to make hyaluronic acid, NAG and other glycosaminoglicans. It's used for the repair of tendons and ligaments. I'm hopeful this will help with a herniated lumbar disk as well as an inguinal hernia I currently have. I already see a difference in the elasticity of my skin, specially some saggy areas in my face that have tightened up. It's also used heavily by the pancreas to make insulin and can positively affect fasting glucose levels. Not to mention is the third cofactor for superoxide dismutase, along with copper and zinc. Magnesium is a direct antagonist of manganese and I've been using high doses of Mg for years now, inadvertently worsening my situation.

Manganese is a wonderful mineral and it needs more attention in this forum.

Edited by Lufega, 18 August 2009 - 12:13 AM.

[rwac]

Lufega, be careful with Manganese. I just re-added it to my regimen reading your post, and I think it has the effect of making me dizzy, and lose my balance.

I already take about 2.5mg per day in my multimineral, I think that's enough for me.

[Lufega]

Lufega, be careful with Manganese. I just re-added it to my regimen reading your post, and I think it has the effect of making me dizzy, and lose my balance.

I already take about 2.5mg per day in my multimineral, I think that's enough for me.

What dose are you using? The first few days weird things happened but it's been awsome ever since. I have more energy and indurance at the gym. For example, I was never abl to do more than 10 crunches (sad, I know!). EVER. Since using Mn, I can go on and on and on...

Mn enhances muscle function and tonicity, apparently by boosting ACH production so this effect is understandable. This is why it's used by patients with Myasthenia Gravis with apparently good results.

[rwac]

What dose are you using? The first few days weird things happened but it's been awsome ever since. I have more energy and indurance at the gym. For example, I was never abl to do more than 10 crunches (sad, I know!). EVER. Since using Mn, I can go on and on and on...

Mn enhances muscle function and tonicity, apparently by boosting ACH production so this effect is understandable. This is why it's used by patients with Myasthenia Gravis with apparently good results.

I added in 20 mg of Manganese for a few days, and I started feeling dizzy and losing my footing which is quite unusual for me.

I have no problems with doing more than 10 crunches, but if I do too much, I will regret it the next day.

[Blue]

Check out this:
http://lpi.oregonsta...dex.html#safety

[nameless]

Lufega: I could have sworn I read past forum posts where you stated manganese was causing you some problems, and you were extolling the virtues of magnesium and how it was helping you. Now manganese is helping, yet magnesium is depleting manganese making things worse? Maybe whatever is going on health-wise has nothing to do with magnesium or manganese?

Probably best to be safe and don't go over the UL (at the very least).

[Lufega]

Thanks for the safety link, Blue. I'm not a newborn and although my liver is under stress right now, my liver function is not impaired so I don't run the risk of overdoing it.

Manganese in drinking water may be more bioavailable than manganese in food...

This kind of toxicity doesn't apply to dietary intake.

A single case of manganese toxicity was reported in a person who took large amounts of mineral supplements for years (32), while another case was reported as a result of a person taking a Chinese herbal supplement (25). Manganese toxicity resulting from foods alone has not been reported in humans, even though certain vegetarian diets could provide up to 20 mg/day of manganese (4, 32).

I can't find the study reference in #32? Can anyone try to pick it up?

32. Keen CL, Zidenberg-Cherr S. Manganese toxicity in humans and experimental animals. In: Klimis-Tavantzis DL, ed. Manganese in health and disease. Boca Raton: CRC Press, Inc; 1994:193-205.

[Lufega]

Lufega: I could have sworn I read past forum posts where you stated manganese was causing you some problems, and you were extolling the virtues of magnesium and how it was helping you. Now manganese is helping, yet magnesium is depleting manganese making things worse? Maybe whatever is going on health-wise has nothing to do with magnesium or manganese?

Probably best to be safe and don't go over the UL (at the very least).

Nameless, your memory is very good. What are you using? lol

This is the post where I stated that. http://www.imminst.o...&...st&p=310947

Like I said, the first few days I used it I felt some weird things but it's been great ever since. I dose every other day. Magnesium has been helpful for other things, like the MVP, stress and anxiety and even though it can replace manganese in some enzymatic processes, I feel the effect more with Mn. However, since they antagonize one another, I use them at different times.

Rwac,

I'm concerned about the UL and the 20 mg dose produces a very strong effect. Twinlabs has one that is 10 mg. I'm going to order that one. You said in this post that Mn made you feel better. What happened? Btw, thanks the for the study linking low Mn to low insulin production. I noticed that my fasting glucose is slowly increasing over the years from 70 mg/dl and my last test was 93.

edit: There was also this post where I was bashing manganese. http://www.imminst.o...&...st&p=299526 At the time, I was using so many other things, it took me a while to determine the cause. I narrowed it down to eleuthero, forskolin and a few other things. Stopping these ended this problem. All I know is that I feel great right now. I'm out there, I'm dating, I'm social, I want to do things again, I have more energy to do things. It's awsome. I should note, I gave Mn to a friend who is diabetic because it aids the pancreas in insulin production. He also told me he felt more energized and less fatigued.

Edited by Lufega, 25 August 2009 - 01:15 AM.

[rwac]

Oh, by-the-way, guess what else Manganese is needed for ?

T4 production in the thyroid. Interesting.

[Lufega]

Yep. It's also needed for insulin, dopamine, acetylcholine, SOD, Nitric Oxide and on and on. This is all very interesting.

Another thing, my sugar cravings and hypoglycemia problems have completely stopped. I have NO cravings for sweets which was a big problem for me.

Edited by Lufega, 25 August 2009 - 03:07 AM.

[k10]

I'm gonna jump on the manganese bandwagon in a couple of days...

[Lufega]

20 mg is a bit strong. It almost feels like pramipexole did except I'm not crossdressing yet I'm on vacation from school now, which is good because I've been all about pleasure seeking with Mn. I just ordered the 10 mg Twinlabs. We'll see how it goes...

[Lufega]

My last chest X-ray showed a dilated aortic notch. This is a sign of weak connective tissue integrity. Looks like Mn can help. It also seems that MnSOD is the principal antioxidant in the mito, instead of the zinc/copper SOD. I posted a study earlier that showed decreased levels of SOD in patients with alpha-1-antitrypsin like myself.

Manganese deficiency alters arterial glycosaminoglycan structure in the Sprague-Dawley rat

Initially, I was researching hyaluronic acid. I was very impressed by that segment on a Japanese village where they apparently eat foods with high amounts of HA and have almost beat more age-related degenerative conditions. I was trying to find out how HA is made in the body and found that Mn stimulates this glycosaminoglycan more so than copper. I was on the copper bandwagon for sometime and after extensive testing, found nothing wrong in this area. Copper ceruloplasmin and serum was a bit low but liver stores where in normal range. Supplementing with copper also didn't provide any additional beneftis. I also have many problems involving poor connective tissue and I've been using supps to enhance this area like vit. c, zinc, copper, lysine, glycine etc. However, it seems like Mn is the best supplement available to stimulate connective tissue production and function.

Edited by Lufega, 25 August 2009 - 07:05 PM.

[Lufega]

Mn as a cofactor for dopamine. It's hard to find sources to back this up. I just read scant statements here and there. This picture should help, though.

[rwac]

I'm concerned about the UL and the 20 mg dose produces a very strong effect. Twinlabs has one that is 10 mg. I'm going to order that one. You said in this post that Mn made you feel better. What happened? Btw, thanks the for the study linking low Mn to low insulin production. I noticed that my fasting glucose is slowly increasing over the years from 70 mg/dl and my last test was 93.

edit: There was also this post where I was bashing manganese. http://www.imminst.o...&...st&p=299526 At the time, I was using so many other things, it took me a while to determine the cause. I narrowed it down to eleuthero, forskolin and a few other things. Stopping these ended this problem. All I know is that I feel great right now. I'm out there, I'm dating, I'm social, I want to do things again, I have more energy to do things. It's awsome. I should note, I gave Mn to a friend who is diabetic because it aids the pancreas in insulin production. He also told me he felt more energized and less fatigued.

Oops. Sorry I didn't see the part where you asked me a question.

So basically when I first used Manganese, it worked great. Then after a while i noticed that Mn was actually causing me to be tired, so I stopped.

Perhaps it was merely that I was taking too much (20mg/day)...

And now, Mn does some good things. 20 mg is too much, but perhaps 10 mg is a better dose.

[seaexplorer]

This is an amazing regimen. There are things on this list that I never heard of. I bet it costs a ton. I didn't read through the rest of the replies, just marveling at that list and schedule ...