Merlyn
I would not bother with the on-line heavy metal test--unknown company, etc--no dr would accept the results, even if very high--you would just have to get the accepted test done anyway.
Re: lead test--see my discussion below re ZPP test.
Creatine clearance can also show if you are dehydrated or not.
Re: leaky gut -- food allergies?
At this point I wonder if we are on the right track or not.
Got my blood measured the day after I did the phlebotomy. It was non-fasting, since did not expect to do the test. Will need to see a hematologist I think--my dr is in the dark, she does not know what to expect re bloods right after a phlebotomy. Maybe you are a bit more aware of this by now Merlyn, and could comment.
My RBC were low, Hemoglobin low, Hematocrit low (all were just okay prior, in fact the agency where got the phlebotomy said my hemoglobin was high) AND my iron total was higher than previous, but still within range-- 110 (40-160); my TIBC 289 (250-450); Trans Sat 38 (15-50)-higher than previous; Ferritin 81 (20-288). This ferritin is HIGHEST of any of the 4 tests done since Jan 2010!
And to complicate things, also did a Zinc Protoporphyrin Test (ZPP)--and was 1 count higher than the range figure, so High (and the lab made notation that they ran the test twice, to make sure of results). This test can show lead poisoning (chronic) which means lead in bones etc, or LOW iron, or Erytropoietic Porphyria(EPP)(but i think only with super high numbers would indicate the EPP)!
Crazy, I start with Heterozygous for H63D mutation, assume could have slight iron overload, do one phlebotomy, and RBC, Hemoglobin, and Hematocrit immediately in low range. And manage to confuse the issue by doing the ZPP test, thinking might get answer to Porphyria, but seems to be showing lead poisoning!
We did a Lead blood level test today--should have the results in a few days. But if is chronic, the Blood level might be normal. Can't imaging where that would come from--and if chronic ????
Anyway, I can't sort it out, esp til get the Lead test back. Might then have to go to an environmental medicine Dr. !!
AND the great Energy gotten right after the phlebotomy is waning at this point.
Would appreciate any comments Merlyn and Bethr. At this point, I am confused and upset.
Phlebotomy anyone?
have been searching for some answers on internet--
in the British guidelines re HH, they state that with a phlebotomy, each 500 ml of blood removed takes about 250 mg of Iron in form of hemoglobin, and the synthesis of new hemoglobin removes iron from stores, which are gradually depleted with successive phlebotomies. So, if I get this corrrectly, my hemoglobin would be lower right after the phlebotomy, but then only in replacing this removed hemoglobin iron would the ferritin come down--so the ferritin decrease takes time.
Makes sense, in light of the restrictions on donating blood only every 56 days--they want full iron restored before donate again. So answer to iron overload is to donate much sooner than the 56 days, in order to deplete the iron
gradually rather than let it re-build to same amt.
They also state elsewhere to measure the ferritin monthly when doing weekly phlebotomies, so guess it takes a month for ferritin to start reflecting changes--and if this goes below 50, to also measure the Trans Sat--both should be below 50.
So, if I read this correctly, my blood results not too bad--seems to be what we want so far--and in only 1 phlebotomy lowered the hemoglobin significantly.
Looks like weekly phlebs would be too much for me--the restriction on weekly phlebs is the hemoglobin and/or hematocrit level--and mine are too low to have another phleb right now. Not sure how fast the hemoglobin is renewed. Need to find that info. Possibly is only a week, and that is why the schedule is usually set for weekly.
maybe I can get my dr to measure the bloods again on Tues, which would be two weeks from this measurement I am discussing now. Those results would be telling.
So, i guess my main concern now is the lead issue.
in the British guidelines re HH, they state that with a phlebotomy, each 500 ml of blood removed takes about 250 mg of Iron in form of hemoglobin, and the synthesis of new hemoglobin removes iron from stores, which are gradually depleted with successive phlebotomies. So, if I get this corrrectly, my hemoglobin would be lower right after the phlebotomy, but then only in replacing this removed hemoglobin iron would the ferritin come down--so the ferritin decrease takes time.
Makes sense, in light of the restrictions on donating blood only every 56 days--they want full iron restored before donate again. So answer to iron overload is to donate much sooner than the 56 days, in order to deplete the iron
gradually rather than let it re-build to same amt.
They also state elsewhere to measure the ferritin monthly when doing weekly phlebotomies, so guess it takes a month for ferritin to start reflecting changes--and if this goes below 50, to also measure the Trans Sat--both should be below 50.
So, if I read this correctly, my blood results not too bad--seems to be what we want so far--and in only 1 phlebotomy lowered the hemoglobin significantly.
Looks like weekly phlebs would be too much for me--the restriction on weekly phlebs is the hemoglobin and/or hematocrit level--and mine are too low to have another phleb right now. Not sure how fast the hemoglobin is renewed. Need to find that info. Possibly is only a week, and that is why the schedule is usually set for weekly.
maybe I can get my dr to measure the bloods again on Tues, which would be two weeks from this measurement I am discussing now. Those results would be telling.
So, i guess my main concern now is the lead issue.
Wow, think I have the answer--think this was absolutely the wrong time to run the ZPP test--
rather than lead I think this ZPP test is indeed reflecting anemia--the phlebotomy induced anemia! I just had 250 ml of iron removed from my blood, leaving me with temporary low RBC, low Hemoglobin and low hematocrit.
am reading that ZPP reflects status of heme synthesis, so the very worst time to run it would be right after a phlebotomy
LOL
EPPorphyria would be reflected with this test only if the High number was much higher than mine was.
And I just can't think of any massive lead exposure I've had--but will hopefully eliminate that aspect of test when get blood level of lead results back on Tuesday.
and Merlyn, you could not use this ZPP test to show lead stored from years ago--it is only a reflection of past few months (the Blood level is for past few weeks)--did not see anything on how to check for previous lead contamination as I rummaged thru all this.
For us non-doctors (and even for my osteo dr who does not have the time and leaves the research to me), this is SO confusing to plow thru--to have one test to help determine 3 fairly differing conditions!! Certainly have learned a lot with this.
(to be fair to myself
, the lab report was misleading--only did CBC, Iron panel, and the ZPP test--all results on same form--
But on the form, the lab gave industial exposrure for lead, and said tor refer to Occupational Safety and Health Admin regulations for exposure criteria--and that they had redone the test a second time to confirm results--So, even though it was with blood results, which logically they could piece together and see the low blood heme parameters would mean high ZPP, instead they posted all the info on lead overload!!)
and to really confuse things, this is a partial list of effects of lead poisoning, which could be same for MS --foot drop even!
xTiredness
xSleep problems
xDizziness
xIrritability
xNervousness
xHeadaches
xDifficulty concentrating
xDepression
xForgetfulness
xHyperactivity (children)
xNumbness
xWrist or foot drop
xWeakness
xClumsiness
xJoint and muscle pain
xVomiting
xLoss of Appetite
xStomach aches
xConstipation
rather than lead I think this ZPP test is indeed reflecting anemia--the phlebotomy induced anemia! I just had 250 ml of iron removed from my blood, leaving me with temporary low RBC, low Hemoglobin and low hematocrit.
am reading that ZPP reflects status of heme synthesis, so the very worst time to run it would be right after a phlebotomy
LOLEPPorphyria would be reflected with this test only if the High number was much higher than mine was.
And I just can't think of any massive lead exposure I've had--but will hopefully eliminate that aspect of test when get blood level of lead results back on Tuesday.
and Merlyn, you could not use this ZPP test to show lead stored from years ago--it is only a reflection of past few months (the Blood level is for past few weeks)--did not see anything on how to check for previous lead contamination as I rummaged thru all this.
For us non-doctors (and even for my osteo dr who does not have the time and leaves the research to me), this is SO confusing to plow thru--to have one test to help determine 3 fairly differing conditions!! Certainly have learned a lot with this.
(to be fair to myself
, the lab report was misleading--only did CBC, Iron panel, and the ZPP test--all results on same form--But on the form, the lab gave industial exposrure for lead, and said tor refer to Occupational Safety and Health Admin regulations for exposure criteria--and that they had redone the test a second time to confirm results--So, even though it was with blood results, which logically they could piece together and see the low blood heme parameters would mean high ZPP, instead they posted all the info on lead overload!!)
and to really confuse things, this is a partial list of effects of lead poisoning, which could be same for MS --foot drop even!
xTiredness
xSleep problems
xDizziness
xIrritability
xNervousness
xHeadaches
xDifficulty concentrating
xDepression
xForgetfulness
xHyperactivity (children)
xNumbness
xWrist or foot drop
xWeakness
xClumsiness
xJoint and muscle pain
xVomiting
xLoss of Appetite
xStomach aches
xConstipation
Shye-I think your blood results are normal for a post-phlebotomy lab test. I think that the hemoglobin, RBC, and hematocrit all reduce the numbers. Mine did.
Lead gets stored in bone, which is why I asked my naturopathic Dr. if EDTA can remove lead from bone. The only studies she could refer to show that osteoporosis tends to lessen or correct on long-term EDTA, at least 800 mg a day. I am up to 2000 mg, but I assume it will take literally years to correct my problem as I have severe bone loss. My environmental Dr. says that bone receptor sites have a higher affinity for lead than for calcium. They have done many studies showing that the lead content of bone today is like hundreds of times higher than prehistoric man... they also know that if you live along the highway, even close to one, you'd accumulate lead. It is still in gasoline, they don't add extra now, but lead is part and parcel of hydrocarbons... I live along the highway, regrettably...
I have been on the search for many years, and every time I discover something that might apply to me, I discover 10 more, none of which is usually familiar to allopathic medicine. I think lead causes hyper coagulation also, and any heavy metal suppresses the immune system so that viral components are more virulent... and viruses protect themselves by encasing themselves in fibrin... my fibrin is very high, so on and on it goes... I'm not sure I have any answers, just puzzlement.
Lead gets stored in bone, which is why I asked my naturopathic Dr. if EDTA can remove lead from bone. The only studies she could refer to show that osteoporosis tends to lessen or correct on long-term EDTA, at least 800 mg a day. I am up to 2000 mg, but I assume it will take literally years to correct my problem as I have severe bone loss. My environmental Dr. says that bone receptor sites have a higher affinity for lead than for calcium. They have done many studies showing that the lead content of bone today is like hundreds of times higher than prehistoric man... they also know that if you live along the highway, even close to one, you'd accumulate lead. It is still in gasoline, they don't add extra now, but lead is part and parcel of hydrocarbons... I live along the highway, regrettably...
I have been on the search for many years, and every time I discover something that might apply to me, I discover 10 more, none of which is usually familiar to allopathic medicine. I think lead causes hyper coagulation also, and any heavy metal suppresses the immune system so that viral components are more virulent... and viruses protect themselves by encasing themselves in fibrin... my fibrin is very high, so on and on it goes... I'm not sure I have any answers, just puzzlement.
Hi everyone, just a wee note to let you know how I'm going. Seventeen days post phlebotomy and I've been doing really well, fatigue is gone and I'm sleeping right through the night and my energy levels are back to normal. It's been a long time since I slept right through the night regularly, probably a couple of years!
I haven't had any blood tests done for a while to check my Hb or iron. I really feel like I want to stay clear of Drs. for a while if I can, especially when I'm having to treat myself anyway, they are just not worth the stress IMHO. I'm staying away from sulphites and preservatives etc and I'm sure that helps majorly. Basically cooking everything from scratch.
Last time I was at the Dr. he gave me a chit for Porphyria testing just in case I have another attack I can whip the samples straight off to the Lab. You only get about a 24hr window to catch the porphyrins at work, so no time to get to a doctor. With that in place and me trying my hardest to keep my iron levels down, I'm hoping to keep my self healthy and symptom free. I'll definitely be doing the 4 phlebs a year from now on through blood donation.
I haven't had any blood tests done for a while to check my Hb or iron. I really feel like I want to stay clear of Drs. for a while if I can, especially when I'm having to treat myself anyway, they are just not worth the stress IMHO. I'm staying away from sulphites and preservatives etc and I'm sure that helps majorly. Basically cooking everything from scratch.
Last time I was at the Dr. he gave me a chit for Porphyria testing just in case I have another attack I can whip the samples straight off to the Lab. You only get about a 24hr window to catch the porphyrins at work, so no time to get to a doctor. With that in place and me trying my hardest to keep my iron levels down, I'm hoping to keep my self healthy and symptom free. I'll definitely be doing the 4 phlebs a year from now on through blood donation.
Merlyn,
I'm doing a lot of research, one of things is looking into bone accumulation of trace minerals, and come across info re lead and iron and zinc--if anything looks imp, will pass it on.
My lead blood level was low--so definitely the ZPP indicated the heme level.
Maybe you are right Bethr, that I don't have to worry about doing the phlebs more than the donation span of every 56 days--my Ferritin is 81, and should decrease in the next few weeks as as new red cells are made to replace the removed blood. Will get my dr to test the ferritin level week after next--which will 4 weeks from phleb. I will still try for an earlier phlebotomy, but if not, (my dr does not want me to get it earlier--she is not informed on this, and is using me as her guide, and is worried my approach is too radical for the mainstsream drs, and she does not want to be so blatent in going against the mainstream, ie, where she
could get caught).do see that eventually the ferritin will decrease, but will just take longer.
And I am certainly better after the phlebotomy--not as much energy as the first few days, but has evened out, and is certainly much better than prior to phleb--brain much clearer also.
Bethr, sounds like you are well recovered! that is great-
keep in touch
I'm doing a lot of research, one of things is looking into bone accumulation of trace minerals, and come across info re lead and iron and zinc--if anything looks imp, will pass it on.
My lead blood level was low--so definitely the ZPP indicated the heme level.
Maybe you are right Bethr, that I don't have to worry about doing the phlebs more than the donation span of every 56 days--my Ferritin is 81, and should decrease in the next few weeks as as new red cells are made to replace the removed blood. Will get my dr to test the ferritin level week after next--which will 4 weeks from phleb. I will still try for an earlier phlebotomy, but if not, (my dr does not want me to get it earlier--she is not informed on this, and is using me as her guide, and is worried my approach is too radical for the mainstsream drs, and she does not want to be so blatent in going against the mainstream, ie, where she
could get caught).do see that eventually the ferritin will decrease, but will just take longer.
And I am certainly better after the phlebotomy--not as much energy as the first few days, but has evened out, and is certainly much better than prior to phleb--brain much clearer also.
Bethr, sounds like you are well recovered! that is great-
keep in touch
Shye-I think you will be okay just doing the normal blood donation schedule... I wish I had that option. I found my 60 mL blood removal did not do much at all, I need to get rid of another 100-150 mL
I am sorry my home experiments did not pan out because it would've made it easier to self treat of course. I am so glad you are responding, it is such a relief to find something natural that is beneficial, and cheap!
I am sorry my home experiments did not pan out because it would've made it easier to self treat of course. I am so glad you are responding, it is such a relief to find something natural that is beneficial, and cheap!
Shye, my first phleb also "wore off" throughout the following month and I slipped back into fatigue and daytime sleeping mode. This second time I'm much more stable, I didn't get the "high" feeling either (a bit disappointing as it was a magic feeling that i would love to repeat).
Just a quick question on your lead tests. Did you do the Delta ALA test? That's the one I'd like to have some time. When my son had his problems as a six year old, his symptoms were similar to lead poisoning in children, hyperactive, unteachable, rash, anger outbursts and a scissor gait when he walked. Porphyria symptoms and lead poisoning in children are very similar. When I think about it, it could have been either as in his first two years we owned an old 1903 villa we were renovating and stripping back the old lead paint on the weatherboards back to the wood.
Just a quick question on your lead tests. Did you do the Delta ALA test? That's the one I'd like to have some time. When my son had his problems as a six year old, his symptoms were similar to lead poisoning in children, hyperactive, unteachable, rash, anger outbursts and a scissor gait when he walked. Porphyria symptoms and lead poisoning in children are very similar. When I think about it, it could have been either as in his first two years we owned an old 1903 villa we were renovating and stripping back the old lead paint on the weatherboards back to the wood.
Bethr-
I did the Delta ALA test with the urinary PBG ages ago--came out negative. But that means nothing-was not having an attack. Was never tested when had an attack--could not convince drs then of what I thought was going on. The one test I think that gave part positive, part negative (and I was not having an attack) was the stool test--would have to chk my drs records on that--can't find my copies.
Interesting about lead, porphyria, and MS similiarity connections.
I did the Delta ALA test with the urinary PBG ages ago--came out negative. But that means nothing-was not having an attack. Was never tested when had an attack--could not convince drs then of what I thought was going on. The one test I think that gave part positive, part negative (and I was not having an attack) was the stool test--would have to chk my drs records on that--can't find my copies.
Interesting about lead, porphyria, and MS similiarity connections.
Merlyn
I think you might be right, maybe I should just aim for the 56 day schedule--I will decide when get ferritin done in two weeks--and if I overdo it, my osteopath might not be so receptive to the offbeat things I ask her to cooperate with--even things like porphyria (although she does think I have that).
where are you blood levels now?
how is it affecting you?
Also, how bad is your osteo? I have it, but is contained with diet, supplements and a 15 minute weight exercise routine every other day--and without the weights every alternating day--you start slow, at one pound, I went to 5 and that is good for me. Really noticed a great difference in symptoms about 6 months into the exercise routine--and then chiro's work broke down a lot of the adhesions that had formed, so could stand straight--was not easy to start with, I was very sick, but over the years is simple now. If you want, I will search for the book on exercise that helped me-- if can't find mine, will at least find the title on the internet.)
I don't even bother with scans anymore, no reason to--I am doing everything I can, won't take their meds, bones feel okay, am standing straighter than in years, so no scans now for me.
Is there any chance you can find someone trained who is willing to do a phlebotomy (probably at your home)(even if only 1/2 pint at a time to be on safe side)? Sort of put out the word to all the personnel you trust at the various drs offices--esp in alternative offices?
I think you might be right, maybe I should just aim for the 56 day schedule--I will decide when get ferritin done in two weeks--and if I overdo it, my osteopath might not be so receptive to the offbeat things I ask her to cooperate with--even things like porphyria (although she does think I have that).
where are you blood levels now?
how is it affecting you?
Also, how bad is your osteo? I have it, but is contained with diet, supplements and a 15 minute weight exercise routine every other day--and without the weights every alternating day--you start slow, at one pound, I went to 5 and that is good for me. Really noticed a great difference in symptoms about 6 months into the exercise routine--and then chiro's work broke down a lot of the adhesions that had formed, so could stand straight--was not easy to start with, I was very sick, but over the years is simple now. If you want, I will search for the book on exercise that helped me-- if can't find mine, will at least find the title on the internet.)
I don't even bother with scans anymore, no reason to--I am doing everything I can, won't take their meds, bones feel okay, am standing straighter than in years, so no scans now for me.
Is there any chance you can find someone trained who is willing to do a phlebotomy (probably at your home)(even if only 1/2 pint at a time to be on safe side)? Sort of put out the word to all the personnel you trust at the various drs offices--esp in alternative offices?
Merlyn
forgot to mention--am doing some research on evening primrose oil, why is so imp for MS, and one of things mentioned is leaky gut helped by EPO (thru increasing the PGE1 prostaglandin, antiinflammatory action).
No further details in this book, if find more, will post. I have been taking EPO for a few months now--so many changes for better recently, from so many things, hard sometimes to differentiate. I still do have food allergies, not sure if fewer, or decreased yet, will try to pay more attention.
forgot to mention--am doing some research on evening primrose oil, why is so imp for MS, and one of things mentioned is leaky gut helped by EPO (thru increasing the PGE1 prostaglandin, antiinflammatory action).
No further details in this book, if find more, will post. I have been taking EPO for a few months now--so many changes for better recently, from so many things, hard sometimes to differentiate. I still do have food allergies, not sure if fewer, or decreased yet, will try to pay more attention.
With regard to phlebotomies, I too asked to donate blood and was rejected because of MS. So instead of offering blood for donation, why not try and ask to have blood taken under medical supervision at a hospital under a doctor's prescription, which blood could then be destroyed? I plan to ask Dr. Dake next week while I am at Stanford for my annual checkup, but do not have a lot of hope for a positive response though it will be interesting to see what he has to say. Daisyduck
DaisyDuck, my sister can't give blood by donation as she has a DX of MS too. She went to a hemotologist and he said he was not going back to the dark ages - the cheek! Her iron levels/ferritin are above the normal range on blood tests. Ferritin of 160 at last test and she's stuck with it apparently . My ferritin was originally 175 and I also had a high transferrin saturation of 62%. My hemotologist told me to give blood by donation and was not prepared to authorise therapeutic phlebotomies and monitor the situation. Thankfully I only have one brain lesion and therefore don't have a DX for MS, or I would still be heavily fatigued and sleeping my life away.
Let us know how you get on with the Drs.
. My ferritin was originally 175 and I also had a high transferrin saturation of 62%. My hemotologist told me to give blood by donation and was not prepared to authorise therapeutic phlebotomies and monitor the situation. Thankfully I only have one brain lesion and therefore don't have a DX for MS, or I would still be heavily fatigued and sleeping my life away.Let us know how you get on with the Drs.
Daisyduck
where do you live? Here in NY there is not that restriction against MS, unless you are in active relapse, and they don't even question you re: MS. I just know this because went to site, where all restrictions listed. But they did not ask me ANY questions re most of the restrictions. Main ques were on any recent sex contact with HIV, hepatitis.
If you are in the states, what agency did you try to donate to? If there is a Red Cross Blood Drive going on anywhere in your neighborhood, they do not have the restriction on MS.
Also, here in NY some of the specialty hospitals have their own blood drives--so maybe if you find a hospital that has a blood donation program, that would be a way to go.
And the less info you volunteer re: your health, the better. Answer the questions they give re: their protocol on donations, but don't volunteer anything. Their questions rule out what they don't want, but if you raise further questions, they need to see supervisor, and they might say no just because don't know, and being cautious.
Did you get a blood panel done? Dake, or any Dr, cannot make any decisons without the results of a recent blood panel. Unless you are above the reference range, am sure he will not write a script. And if you are, he will most probably refer you to a specialist. You need to explore all options re: donation.
Good luck--keep us posted.
where do you live? Here in NY there is not that restriction against MS, unless you are in active relapse, and they don't even question you re: MS. I just know this because went to site, where all restrictions listed. But they did not ask me ANY questions re most of the restrictions. Main ques were on any recent sex contact with HIV, hepatitis.
If you are in the states, what agency did you try to donate to? If there is a Red Cross Blood Drive going on anywhere in your neighborhood, they do not have the restriction on MS.
Also, here in NY some of the specialty hospitals have their own blood drives--so maybe if you find a hospital that has a blood donation program, that would be a way to go.
And the less info you volunteer re: your health, the better. Answer the questions they give re: their protocol on donations, but don't volunteer anything. Their questions rule out what they don't want, but if you raise further questions, they need to see supervisor, and they might say no just because don't know, and being cautious.
Did you get a blood panel done? Dake, or any Dr, cannot make any decisons without the results of a recent blood panel. Unless you are above the reference range, am sure he will not write a script. And if you are, he will most probably refer you to a specialist. You need to explore all options re: donation.
Good luck--keep us posted.
I am in California, guys. We have a blood mobile comes around, and I wanted to just go and donate there, especially since I am A neg. In California there seems to be a prohibition about taking blood from us, and I wondered also if they use my blood, would I be passing on something bad to others? Thanks to both of you for responding. I also do not believe Dr. Dake would order a phlebotomy for me, but I'll ask about it and pass on the info, as well as the info with regard to not feeling as good any longer as I did the six months right after surgery, such as my heat resistance is down though not entirely gone. Daisyduck