Phlebotomy anyone?

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

Postby jimmylegs » Mon Apr 25, 2011 11:03 am

hi bethr that is a puzzle.

you know the table from labtestsonline? ... /test.html

i looked at the research in controls and came up with these average levels (same units as above, approximate numbers, not an exhaustive review):

serum iron avg ~22
TIBC avg ~50
Tsat % CALC SIavg/TIBCavg = 44 (top end of safe range)
ferritin avg ~112
transferrin ~3.1

so in your sis's case it looks like for iron, tsat% and tranferrin, she's in line with healthy controls.

with those numbers... what do you think about hemolytic anemia? although i understand you don't see that with primary hemochromatosis.. only secondary?? ... 000327.htm
odd sx? no dx? check w/ dietitian
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Postby Bethr » Thu Apr 28, 2011 5:15 pm

Yeah, she's top range for transferrin, when her ferritin still has above range stores (top range here for ferritin is 150) she's 153.
The body is supposed to use stored ferritin BEFORE it raises transferrin.
It shouldn't go up until her ferritin/iron stores goes down.

Anyway's, bit of a breakthrough for me today.
I've been "off-peak" for a few weeks now. I'm due a
phleb in a couple of weeks, so usual slight hip pains, couple of days sleeping afternoons last week etc. So I had a blood test Wednesday, and
my hemoglobin, hematocrit and platelets are all above range again :idea: .
I've had my suspicions about Polycythemia, as I've had this happen
quite a few times now. My iron panel was very good, nice low average levels, ferritin at 43 for 5 months now, very stable even though I phlebed.

Treatment for Polycythemia is phlebotomy!
But I'll need the iron levels even lower to just above anemic.
Ferritin around 20.

I already know what cures me, I'm just catching up on the cause :lol:
Hey, I've got thick, iron rich, oxygen-depleted blood. Maybe you don't need to have CCSVI to get a brain lesion :lol:

I'm booked in with a hemotologist for a second opinion.
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Postby Bethr » Thu Apr 28, 2011 6:38 pm

A link between the processes of CCSVI and Polycythemia?
What happens to the blood at altitude etc. We have discussed this
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Postby Merlyn » Mon May 16, 2011 4:45 pm

Out of curiosity, I did a nighttime oximeter test for oxygen levels in the blood. Although my Dr. says it was essentially normal, I had 26 periods of desaturation where oxygen levels fell to 80%. I spent 0.6% of the night with an oxygen saturation level of less than 90.

Comments: the majority of the study is normal although there are two brief clusters of desaturation perhaps indicating mild positional or sleep stage related sleep apnea.

Highest pulse: 139
Lowest Pulse: 59
Mean Pulse: 76
Highest SpO2: 100%
Lowest SpO2: 80%
Mean SpO2: 96.4%

There were no desaturation events over three minutes duration.
There were 26 desaturation events of less than three minutes duration during which:
The mean high with 97.5% The mean low was 90.3%
Desaturation event index (number of events per hour): 3.2
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Postby WeWillBeatMS » Tue May 17, 2011 9:30 am

Merlyn wrote:Although my Dr. says it was essentially normal, I had 26 periods of desaturation where oxygen levels fell to 80%.

What kind of doctor told you that an oxygen saturation level of 80% is ok?

When my son was in the hospital for RSV the nurses would come into his room when the number fell below 90%.

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Postby Merlyn » Wed May 18, 2011 12:34 pm

What kind of doctor? My doctor, who is basically a write-off, the only reason I go to him is that he tends to support my requests for trying things. But otherwise I don't think I would bother with him. I thank you for the feedback because I had no idea whether this test of mine fell into the range of totally normal or not. But very little research has turned up the fact that anything below 92% set off some alarm bells. ... -you-worry

Low Oxygen Levels: How Low is Too Low and Should You Worry?

September 11, 2008 by Carrie Tucker

Low oxygen levels will rob you of your eye sight, short term memory, and your energy. Eventually low oxygen levels will weaken your heart muscle.

Read that last sentence again. It is that important.

So tell me, why is it that online resources for heart failure, and for that matter, chronic lung disease all but ignore low oxygen levels?

If you know of any “how low is too low” information online, please let us know where you found it. Heart Failure Solutions is eager to work with any like minded sites to spread awareness about just how effective supplemental oxygen is.

So how low IS too low?

7 Facts to Remember About Blood Oxygen Saturation Levels

1. When oxygen saturation levels fall below 92%, the pressure of the oxygen in your blood is too low to penetrate the walls of the red blood cells. It is a matter of gas laws.

2. Your insurance company will not pay for oxygen unless your levels fall to 88% oxygen saturation. This has nothing to do with what is best for you, it is just the point at which your insurance is willing to pay.

3. Every time your oxygen level falls below 92% saturation the cells of your body are oxygen starved.

4. When you fail to meet your oxygen needs, every organ in your body suffers the consequences.

5. Low oxygen levels may be present only at certain times.
■when retaining excessive fluid
■when airways are reacting to pollutants
■with respiratory illness
■sleep apnea
■about 3:00am when you wake gasping for air
■with activity when the heart muscle has become weak, though isn’t technically “congestive heart failure”…..yet

6. Recurring low oxygen levels are harmful and should be treated with supplemental oxygen.

7. The problem is that your doctor may not witness your oxygen levels at 88%, and if he doesn’t see that reading on an oxygen meter (oximeter), most insurance companies will not pay for it, and therefore doctors don’t order it.

Low oxygen levels are definitely something to worry about!

If you feel you may be experiencing low oxygen levels be sure to ask your doctor to check your pulse oximetry reading.

Symptoms are:
■shortness of breath/ difficulty breathing/ dyspnea
■extreme fatigue
■chest tightness
■mental confusion
■tingling fingers
■water retention (especially feet/ ankles)
■chronic cough

If you are experiencing oxygen saturations below 92% now, waiting for your doctor to witness it below 88% and order oxygen is equal to sitting around waiting to get worse.

Whether you have a diagnosed oxygen deficit that you are aware of, or if you think you might have low oxygen levels, it would be a good idea to purchase or borrow a portable pulse oximeter. (oxygen meter)

Your caregivers and loved ones can also be on the look out for blue coloring around your lips.

If your budget doesn’t allow for plenty of fresh fruits and vegetables, it is better to use your observation skills.

Using supplemental oxygen is one action you can take immediately to nurture yourself and slow the drain on your vitality. It’s often uncomfortable and inconvenient, but it doesn’t require that you do anything other than use it!

Breath building on the other hand takes focused-consistent effort.

There is a lot you can do to improve your low oxygen levels, but safety comes first! Meet your needs NOW with supplemental oxygen.

Low Oxygen Levels are a Matter of Life and Death!
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Postby Merlyn » Thu May 19, 2011 12:35 pm

Because last night was Wednesday night, I was able to ask Dr. Lyn questions on the conference call. She said going down to 80% oxygen saturation level is totally uncool... she said in the US when people start going down to less than 88% oxygen saturation levels, they recommend oxygen treatment. She said generally going down to 80% oxygen indicate COPD or heart failure... but I just looked up those symptoms and I do not have signs of either. I think what I am showing is the result of low hemoglobin/anemia. When she asked me what my hemoglobin level was (10.9), she said it should be over 12 and I should start taking lots of vitamin B 12 and consider iron supplementation. But I do not have iron deficiency anemia, it is likely the lack of B12 due to a gut full of bad bacteria... which I gather mild hyperbarics can correct! My husband is on his way down to Seattle/Tacoma to pick up a Vitaeris 320, hopefully it is all intact as the seller has promised. I could not really afford the damn thing, but I see nothing on the horizon that I could do. I mean physically or financially. I do not have the money to experiment with CCSVI, nor can I see myself getting to the clinic to do it! So this is it, wish me luck! Having only seen pictures of them on the Internet, I sure hope I can get into the chamber without too much problem. Probably won't know until I get it set up in my house.
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Postby Bethr » Thu May 19, 2011 1:04 pm

Really interesting Merlyn.
The response of the body to low oxygen is to produce morehemoglobin, ie: provide the body with more oxygen as happens at high altitude. Twenty years ago I stayed in the Austrian Alps for two weeks, and felt so tired and lethargic, I could hardly keep up on the ski's!
I'm really wondering if the altitude had an effect on my hb.

My hemoglobin is sitting just under 160, even after having over 2 litres taken over the past year (+ menstruation + other bleeding problems I have).
I get my phleb on Monday :D

I'm experiencing fatigue and joint pain probably about two days a week
currently. Once the phleb is done, from experience I'll be fatigue/brain fog/stiff joint free for at least 6 weeks.

My brain problems really kicked in 2008 when my iron saturation of transferrin was at 62% (safe is up to about 35% from the latest research).

A comination of iron and low oxygen, high hb?
PS: I'm a smoker!
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Postby Merlyn » Sat May 21, 2011 2:22 pm

Hi Bethr-

My hemoglobin never bounced back so I am still in the anemic category. It is not iron deficiency anemia, but neither am I responding to B12/folic acid etc.

I now have in my house a Vitaeris 320. I got an amazing deal from a bodybuilder and I am so thrilled because the chamber was never used really and it is in perfect perfect condition. New they are 22,000 and I got this for 10,500, not cheap but my hands are purple now which is added to purple feet. I think this is the sign of hypoxia and my oximeter test was a good clue. I think hemochromatosis genetics screws up the way we use iron and perhaps affects our blood quality. I am still convinced all of our problems originate in our blood, the number of people with MS that are severely anemic, have pernicious anemia or ferritin high off the scale is a little peculiar to say the least. I am looking forward to treating myself at home with this oxygen therapy and seeing what happens.

I feel fortunate will be able to pull it off, I know the affordability of such therapy is out of the range of many, and I want to sell my truck to help pay for it. I will let people know, but I also know that it is going to take many treatments, probably over the 80 mark to improve... the more I read about hyperbarics, the more impressed I became and then the oximeter test sort of clinched it for me. Purple feet and purple hands is definitely not normal and is probably an indication of hypoxia tied up with the anemia.
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Postby Merlyn » Wed May 25, 2011 12:43 pm

Thought This Was Interesting
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Postby Bethr » Wed May 25, 2011 8:20 pm

Very interesting indeed!
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Postby Merlyn » Mon May 30, 2011 12:58 pm

Bethr-I have read that hypoxia induces Polycythemia... ... page3.htm#

It would be interesting if more of us could do an overnight oximeter test, I think if I had this condition I would ask for one of these oxygen measurement tests.

I continue to take pancreatic enzymes and I do find them helpful, when I cut down on the dosage, I get more spasticity.
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Postby Bethr » Mon May 30, 2011 1:10 pm

Yes, hypoxia does induce polycythemia, most smokers have higher hemoglobin. It's very likely that contributes to my problems.
My increased absorption of iron due to the C282Y wouldn't help either.
Treatment for both is phlebotomy.. (and giving up smoking)!
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Postby Merlyn » Mon May 30, 2011 1:43 pm

Message #1256 of 1261 < Prev | Next >

Re: [hbotforhealth] MS

It has worked for me = all symptoms gone for over a year after using the chamber.
charles brock

Sent: Sun, May 8, 2011 7:01:57 PM
Subject: [hbotforhealth] MS


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Postby NormB » Mon Jun 06, 2011 8:00 pm

Greetings all,
I had a blood lab test for ferritin level. Here in Canada they interpret the result in ug/L which the numbers are quite different from what I'm seeing here. The lab says the upper limit is 300 ug/L and mine was 317. How does it corrolate with your numbers?

Take Care All

'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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