Phlebotomy anyone?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Bethr » Wed May 05, 2010 7:59 pm

Great idea to give blood, (if you can't get help any other way). it worked for me, along with the blood tests. Or I'd still be on the couch, in a semi-coma state, of that I'm sure :?
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Postby shye » Thu May 06, 2010 7:47 am

Bethr
missed your post just before my last one--I had read Merlyn's, then worked on my reply, you posted while i wrote my reply to Merlyn, then I didn't check back after I posted.
I am intrigued by some of your statements:
The neurological symptoms are the porphyrins or a combination. Once the iron gets highly saturated, the porphyrins start to increase causing the neurological effect. The cup runneth over, so to speak. Add in a dose of unsafe drugs, ie: my dental injection and you are history. That has happened twice to me, with the accompanying brain lesion, and also in both cases Epilepsy

As I've mentioned before, my dr thinks I have porphyria also--tests so far inconclusive. When I had dental work, severe reactions to the anesthesia--and I was using what the porphyria sites felt were the safer anesthetics (have gone back to using novacaine--reaction much less with this.) My brain lesions showed after several severe incidents with the anesthesia--but no idea if tht is what caused them--had not had a recent MRI prior to that one--did have one 10 yrs prior, which was not a good MRI--need to get someone to compare them. Know when one dr saw the earlier taken MRI, he said there were lesions but not picked up by the radiologist because they were looking for pituitary probs with that MRI (I do not have the radiologist's report for that MRI, and the place that took the MRI has thrown all info out, since past the legal date to keep it.) I would hope tht if had a lot of lesions then (as I do now), that it would have been reported--and my dr then had told me all was okay.
So possibly my severe reactions did result in lesions.
What I am most intrigued by is the iron info you give. Are you saying tht if you have hemochromatosis the excess iron causes porphyrins to increase? I would be really grateful for sources on this--I need all I can get to talk knowlegeably with my dr--she knows a little about all this, will listen to me, but is is relying on my info--and she trusts me for checking and bringing good sources to her.
My (little) understanding is that porphyrins are the coloring of RBCs--and the end product of the porphrin cycle combines with iron to form heme.
So are you saying tht if there is more iron, more porphyrin is cycled to combine with it??? So the extra iron would "cause" porphyria????
AARGH--help!
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Postby Bethr » Thu May 06, 2010 11:11 am

It's quite a hard disease to get your head around, also you have to consider there are at least 8 different types, depending on which gene is at fault. To make it even more complicated, in 80% of sufferers of Porphyria Cutanea Tarda, ie: heavy drinkers, hep.c virus the disease is acquired, and in 20% it is genetic or familial. What I have is definitely familial, as we all react to drugs. Thankfully none of us are on anything, even my dad in his 70's.

The basics on Porphyria is that because one step of the blood making process underfunctions, there are certain substances that are hard to process and the result is loose porphyrins (of your particular genetic type), swimming around in the blood stream. Here I get fuzzy, as they have something to do with electrons or electric signals. That's where the paralysis of the digestive system (classic symptom that I don't get!), or epilepsy, neurological symptoms come in.

The triggers that set off this deficiency in blood making, whether hereditary or acquired are hormones, alcohol, sulphites, iron and other heavy metals, many chemicals and drugs, foods with similar chemical structures, ie: soy mimics eostrogen, so a no no, and smoking (and any smoke apparently, forest fires, no browned meat etc), a few aromatic herbs are out but not sure which ones, and the balsams (citrus, maybe wintergreen??).

According to the long time Porphs I've been communicating with When this process starts (an attack), you will usually find that there were a number of triggers at the same time, a perfect storm, but usually a drug will be on the list, mine is always the dentist, I've only had two fillings in the last 14 yrs, and I've only had two neurological events 2 weeks later (when I ovulated), so that was easily to prove. Once you've had your first attack, you can easily trigger again. The porphyrins get excited! I can feel it in an attack, I'm electric in my chest and if it really gets going, the electric feeling radiates out to my extremeties causing involuntary movements. That happened after my big phlebotomy. It really put me out of balance, but I was awake at last, which more than made up for it.

The idea is to help the body get rid of the porphyrins quickly so to limit any neurological damage and paralysis of the gut. Under treatment brain lesions have reversed. If you don't get help (or help yourself), I think the damage seems to become more permanent or just simmers. My sister is slowly getting permanent nerve damage in her fingers. She's a hairdresser so is constantly around chemicals. Her cup is always 3/4's full and any little thing sets her off. She also has highish iron levels because of the hemochromatosis gene, that keeps her cup nearly full, most of the time and heavily fatigued and brain fogged.

In hospital, to treat an acute attack you are given IV glucose, a huge sugar hit, but you can treat yourself at home by packing sugars and carbohydrates. Some people are given panhemitin (?sp), a blood derivatives that helps to clear the porphyrins. This helps the body to stave off an attack or to subdue one. I don't get the stomach pain, I get chest pain and nerve pain in my extremeties and lower back. Nothing I can't handle, I hate hospitals.

So the questions is: How do we make sure our porphyrins don't get excited. What are the triggers. Every Porph seems to have quite individual triggers, and individual symptoms.
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Postby Bethr » Thu May 06, 2010 11:26 am

One Porph test they don't always do is the Delta ALA urine test.
This is the same urine test they do for Lead Poisoning. Lead poisoning has the same effect as Doss Porphyria and you use the same test. If it comes out positive, they then have to rule out lead poisoning, if that's clear, you have Doss Porphyria. That's a supposedly very rare version. Yet they did studies in Sweden and 2% of the population carry the Doss gene. (It's like Hemochromatosis and you need two genes to get it, or do you :wink: ) Most other Porphyria you only need to inherit one gene.

I'm going to try and get this one done soon.

I've just added in a link on this lead poisoning/Porphyria link, both increase ALA.
http://www.clinchem.org/cgi/content/full/47/9/1710
Lead Poisoning: A New Biochemical Perspective on the Differentiation Between Acquired and Hereditary Neuroporphyria
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Postby Merlyn » Sat May 08, 2010 12:59 pm

When I was a naïve idiot, I decided to strip the window sashes in my house in Calgary to reveal the wood underneath. This house was built in 1919, and I did not even think of lead paint. I used the electric sander, no mask, clouds of dust around... not surprisingly in the year 2000, I tested positive for lead poisoning. Also Mercury... I am now taking one thousand milligrams of EDTA, plan to go up to 2000 eventually... I looked into IVs of EDTA, but I cannot afford to do it. I just did something called an indican test and came back at 3...



http://www.biodia.com/general_content/i ... rview.html


Elevated Levels of Urinary Indican
• Inflammatory bowel disease
• Celiac disease
• Hypochlorhydria
• Achlorhydria
• Gastric ulcer
• Biliary and intestinal obstruction
• Jejunal diverticulosis
• Scleroderma
• Postgastrectomy
• Hartnup's disease
• Pancreatic insufficiency
• Diminished peristalsis
• Blue diaper syndrome
• Hypermotility of the small intestine
Procedure
Detection of indicans depends upon its decomposition to indoxyl and subsequent oxidation to indigo blue. It is then concentrated into a layer of chloroform for easier measurement.
Results
Urine color 0 (normal)
Light blue 1+ (low positive)
Blue 2+ (medium positive)
Violet 3+ (high positive)
Jet black 4+ (very high positive)
Interpretation
A positive test may indicate one of the diseases listed in table 1, hypochlorhydria, bacterial overgrowth in the small and/or large intestine, maldigestion and/or malabsorption of protein.

I think my reaction to the phlebotomy may be tied up to leaky gut, which I knew I had because I was on too many antibiotics for too many years, and have battled Candida major big-time. Perhaps the phlebotomy, besides removing iron, removes circulating immune complexes, inflammatory compounds etc.

My problem is that when I try to take systemic enzymes, my guts hurt so bad I almost end up in the hospital. This indicates intestinal inflammation, I think I am going to culture cabbage juice etc.

http://kulvis.com/#2

What is so confusing about MS is that various people conquer it in various ways...
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Postby shye » Sat May 08, 2010 4:06 pm

Hi Merlyn,
one suggestion is that you possibly have hypochlorhydria--so your food, esp protein, not being broken down and used properly, so would get leaky gut. You could try taking Betain HCL with every bit of protein you eat. Might help a lot.
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Postby Merlyn » Sun May 09, 2010 11:41 am

Shye-yes, I keep HCl on the table, don't always think to take it. Plus bromelain, but multi-digestive enzymes make my guts hurt so bad probably due to inflammation of the intestinal tract. I have done testing for celiac, no anti-bodies detected. Are those tests accurate? I don't know. I did eliminate gluten for seven months again last year, and I did not notice any difference in anything except finding it difficult to come up with things to eat. But I can't keep dumping blood because my hemoglobin is not bouncing back properly. Very disappointing because even that 100 mL removal gave me great relief. As I mentioned previously, I lived on antibiotics due to intractable urinary infections which resolved within six months of getting 16 amalgams removed. I have three kidneys and I think the mercury screwed them up because they were borderline in the first place. But I also know that living on antibiotics wiped out all my good flora and trying to get bacteria to reimplant has been unsuccessful. I find raw unpasteurized apple cider vinegar helpful. I think we have something like 8 pounds of bacteria in our intestines, and I only know of one food that contains l plantarum and that is raw unpasteurized sauerkraut and I've eaten bushels of that. I knew at the time that living on antibiotics was going to be very detrimental to my health, but I had no choice because none of the natural treatments for the bladder infections would do anything effective.

With my leaky gut I will absorb far more EDTA! At least it's good for something...
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Postby Merlyn » Sun May 09, 2010 11:49 am

For me, I wish it were as simple as angioplasty, but I cannot see it being true. My reaction to the phlebotomy tells me that there is something in my blood itself and not just circulation issues.

Clin Neurol Neurosurg. 2010 May 1. [Epub ahead of print]

Rare infections mimicking MS.

Brinar VV, Habek M.

University of Zagreb, School of Medicine and University Hospital Centre Zagreb, Department of Neurology and Refferal Center for Demyelinating Diseases of the Central Nervous System, Zagreb, Croatia.

Abstract
The diagnosis of multiple sclerosis (MS), despite well defined clinical criteria is not always simple. On many occasions it is difficult to differentiate MS from various non-MS idiopathic demyelinating disorders, specific and infectious inflammatory diseases or non-inflammatory demyelinating diseases.

Clinicians should be aware of various clinical and MRI "red flags" that may point to the other diagnosis and demand further diagnostic evaluation. It is generally accepted that atypical clinical symptoms or atypical neuroimaging signs determine necessity for broad differential diagnostic work up.

Of the infectious diseases that are most commonly mistaken for MS the clinician should take into account Whipple's disease, Lyme disease, Syphilis, HIV/AIDS, Brucellosis, HHV-6 infection, Hepatitis C, Mycoplasma and Creutzfeld-Jacob disease, among others.

Cat scratch disease caused by Bartonella hensellae, Mediterranean spotted fever caused by Riketssia connore and Leptospirosis caused by different Leptospira serovars rarely cause focal neurological deficit and demyelinating MRI changes similar to MS.

When atypical clinical and neuroimaging presentations are present, serology on rare infectious diseases that may mimic MS may be warranted.

This review will focus on the infectious diseases mimicking MS with presentation of rare illustrative cases. Copyright © 2010. Published by Elsevier B.V.

PMID: 20439131 [PubMed - as supplied by publisher]

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Postby shye » Sun May 09, 2010 2:10 pm

Merlyn,
once you have used extensive antibiotics, food sources of probiotics are not enough. you need mega dose quantities of Acid and Bifidus at the very least--and mega is at least 10 Billion per day--and better to get more, and with other strains in addition. I would add Culturelle, 1 per day. And you need the mega doses for a few months, then can taper down.
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Postby LR1234 » Sun May 09, 2010 2:32 pm

I think VSL 3 contains 450 Billion per sachet but it is a powder and not an enteric coated capsule so not sure how the bacteria survives the stomach acid.
I take these plus 3 acidophilous from Natures plus.
Last edited by LR1234 on Mon May 10, 2010 9:14 am, edited 1 time in total.
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Postby Bethr » Mon May 10, 2010 8:45 am

Merlyn, you and I both know it's something to do with blood, blood making or something in it. Now I have my ferritin levels down below 100, I'm really improved overall. Prior to the blood draws I slept during the daytime probably about 80-90% of the time, now I've lost that heavy feeling completely, I just don't get it anymore, quite energetic, and I daytime sleep about 20% of the time.

The days I do have daytime sleeping, I get the stiff sore joints also, they are definitely related.

One thing that is nearly permanent now is the heart arrythmias and mild chest pain. Those started straight after the big phleb. I can truly say I have a better quality of life now though, even with the chest pain. I'm having a holster heart monitor put on tomorrow to see if they can pick anything up.

I haven't had any blood taken for 2 months now. I could donate, and they have been ringing me to go back in, but I'm a bit worried it will have a further effect on my heart, so I just can't do it for now, 470mls is a lot of blood, and it seems to put me out of balance taking that much at once.

At least I have that option if I start sleeping a lot during the daytime again. Works like a dream!

It's so weird reading the effects of liberation on CCSVI people, because I get such similar results. They get restenosis and go and get another ballooning/stent done, and I head off to the blood bank :lol:
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Postby shye » Mon May 10, 2010 9:54 am

Bethr-
It is so good to hear how much you have been helped by the phlebotomy--once they do the holter monitor, if it shows nothing, would another blooddraw be worth a try? Then, if no heart probs after this draw, it might just have been coincidence? Or of course, if do get the heart problems, you are closer to some answers.
What about the thougt of getting some essential minerals measured--copper is SO imp to the heart--you might be low already in this, and in getting so much blood drawn, have lost too much at once, thereby affecting your heart. Likewise with zinc, calcium, potassium, and magnesium.
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Postby Bethr » Mon May 10, 2010 11:14 am

I'm really trying to figure all that out. I don't think there is anything wrong with my heart physically. I've never had any problems before, no heart problems in our family, and my blood pressure is always great. I can exercise easily and feel great during and afterwards. It's when I rest that I notice the heart symptoms, especially lying down.

The attack I had in 2008 (after a big dental injection), firstly knocked me out and I slept every day, really chronic, then two weeks later I woke up in the morning and my hand had lost it's motor skills, MRI showed a corresponding lesion and also epilepsy on an EEG. All in the temporal region. It took about three months for the hand to function right again.

I'm kind of thinking that the effect on my heart is coming from my brain. I know that sounds weird. Or it could just be porph pain? I was having some weird electrical stuff going on after that big phleb (it's all documented day by day in this thread, in January 2010). I had little electrical zits on either side of my head and I was absolutely charged with energy, it felt electric, and my heart started trembling, my husband could feel it when he put his hand on my chest. A couple of times it felt like my heart stopped and then went BANG, it threw me up into a sitting position in bed and woke me up. That was darn scarey.

So weird, those feelings. It was wonderful to get rid of the fatigue and aching joints, but the heart stuff was scarey at the same time.
About 10 days after the phleb the tremors in my chest area radiated out to my extremeties and I had a strange fit (I documented that on here too). I was completely conscious right through it, but couldn't control my body, with arms and legs doing involuntary movements. It was all definitely tied in with the heart or chest area. That's where it had been simmering for 10 days.

So all good really. I'll know if it's real or just porph pain. My joints hurt like hell at times, but they have been checked and are all good too!
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Postby Merlyn » Mon May 10, 2010 12:26 pm

Oral probiotics do not implant into the mucosal lining of the gut... unfortunately... you have to keep taking them and taking them and taking them... I have ingested hundreds of bottles without any real improvement. I was tested for leaky gut in the year 2000, came back positive with a gut full of pseudomonas and strep B. probably from living on Cipro. Had developed super infections... tannins kill bad bacteria, things like oregano oil etc... been there done that... I've been working on this for years, and it seems I have not been successful. I think the proper gut Flora is your main immune defense, your main anti-inflammatory.

Probiotics are transient and truthfully I got tired of spending money on them. Which is why I am looking at cultured cabbage juice and fermented veggies.
I am going to experiment with homemade yogurt using a 16 strain probiotic to see whether it will multiply and create a thick yogurt. I know that many companies are working on a human strain probiotic that will implant, but I don't think it's there yet.


http://www.allvita.net/probiotics.htm


Probiotics do not permanently colonize in the body. Therefore, they need to be ingested regularly for their health-promoting effects to persist.† After ingestion, probiotics must adhere to the wall of the intestine. Once attached to the intestinal wall, the bacteria are capable of multiplying and colonizing in the gut, thereby enhancing the immune response.1-3
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Postby shye » Mon May 10, 2010 2:15 pm

Bethr
but our heart is electrical--and needs calcium, potassium, magnesium, sodium to run correctly, as well as the trace elements, esp copper.
I still think you could have an electrolyte imbalance.
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