Exjade and chelation therapy

[Mary4Mike]

I am curious if any of you have done chelation therapy (EDTA – IV) while doing Exjade. I realize that chelation will not remove iron, however it will remove other toxic metals including calcium build up in artery walls. Mike’s GP is recommending chelation, but when we questioned the MDS doc, he just rolled his eyes. He is not into anything alternative. We don’t want to do anything that would interfere with the Exjade, but Mike’s lead levels are high(which can cause a host of other problems). He wants to get off the Exjade as quickly as he can.

Has anyone out there done chelation therapy at all and what were your results?

Thanks for any input on this topic.

[shellbivens]

Hello! I do have to add my 2 cents about IV Chelation. My daddy had his first heart attack at 38 (he is now 57). He had triple bypass and changed his diet (not that it was unhealthy). He has never smoked or drank…just had bad genes. Anyway, about 5 years after the bypass, he began having heart troubles again. The Dr. wanted to do open heart again and he said no and left the hospital AMA. We did some research and found out about IV Chelation. I will tell you, my daddy would not be here today to see 6 grandchildren being born and 1 graduate if it weren’t for the Chelation. Once he was diagnosed with MDS (RARS) in 2005, he went about 8 months before needed a transfusion. Due to his finances, he couldn’t continue the weekly Chelation. Shortly thereafter, he had his first blood transfusion. He has ended up having monthly transfusions and weekly aranesp/procrit shots. About 1 month ago he was able to start chelation therapy again. I am here to tell you that for him, it has worked. He has to have a transfusion about every 5-8 weeks. I take him to the Dr. every Monday for blood check & shot and this week his blood was down to 9.4 (the lowest it has ever been). He never had any chest pains or anything that would indicate low red blood count. He received 2 pints via transfusion last night and just landed in Las Vegas for the MDS Convention. I was planning on going with him & Mom, but at the last minute was not able to go. None of the doctor’s know he is chelating…it’s just not accepted in the medical field. WE KNOW IT WORKS (for him)!! The only treatment he receives is weekly procrit shots and occasional transfusions (if needed). This is just OUR experience. Do your research and see what works for you. Good luck to all!

[marlene]

Hi Mary,

John is going to be seeing a doc next month who will be checking him for heavy metals also. So it will be interesting to see if he wants him to do IV chelation. John is on Exjade also and I too would be concerned about adverse reactions between the two. Please keep us posted on what you end up doing.

Marlene

[Mary4Mike]

Hello Marlene,

We are seriously considering the chelation therapy. The doctor recommended 30 treatments. The hemotologist that diagnosed him with MDS initially felt it was essential to remove the heavy metals. He is no longer practicing onc/hemo due to burn out.

Mike has done chelation for high mercury levels, but they really wiped him out. That was done by injection, one in each hip.

Once he gets started, I will keep you informed. He isn’t looking forward to having more needles inserted, though. Yesterdays tx took 5 attempts to get the needle in…OUCH!

Please let us know what John’s doc has to say about the heavy metals and chelation.

Thanks for responding.

Mary

[Mary4Mike]

Hello Shellbivens,

Thank you so much for your positive testimony on chelation. I have read many stories like your father’s and am convinced that it works. Isn’t it sad that the majority of the medical professionals aren’t accepting of this, not to mention other alternative treatments? If they don’t learn about this in college they won’t open their minds to it.

I am thankful for the wealth of info we can find on the internet. It allows us know what is out there – conventional or alternative. I am not saying that an herb is going to cure MDS, but there are complimentary things we can use along with the other.

Again, thank you. Mike plans to do chelation in the not so distant future….but as you can understand, it means more doctor visits, more needles, etc. (sigh)

I’ll keep you posted.

Mary

[marlene]

Mary and Shellbivens,

Do they monitor your kidneys closely when they did the chelation and also replace any other minerals that are lost?

I have read about an oral chelation that’s supposed to be less expensive. I worry about John’s veins getting poked. They have been so used over the last five years. I’m not sure he would even agree to 30 IV therapies.

When Mike did it for high mercury, why did it wipe him out?

Thanks…..Marlene

[Mary4Mike]

Marlene,

Yes, they monitor kidney function. Mike’s hemo keeps an eye on his kidney function because of the Exjade and Revlimid, also.

After every 10 chelation treatments, he would be given a bag of minerals to replace the good minerals that are chelated out.

Mike has also done oral chelation, however this is no where as effective as IV. The oral is simply herbal and vitamin based where the IV is chemical based (EDTA ).

When Mike did the mercury chelation shots, it probably wiped him out because it is a strong chemical chelator that is used….I would have to look up what it is. It exhausted him more than his usual tiredness. One interesting side note: the few times he did the IV chelation, his perspiration had a heavy metal “smell” for a couple of days afterwards.

He just informed me ( ) that he has not made up his mind about doing the chelation. The choice has to be his of course, but I hope he decides to do it. Right now we are in the middle of giving Revlimid it’s trial run. So far, it doesn’t appear to be working for him, but we have 2 more months to go. Thankfully he has had no negative side effects except constipation.

What other treatment is John on other than the Exjade? I’m sure you have already written this.
I will be interested to hear about his heavy metal testing.

Mary

[marlene]

Hi Mary,

Thanks so much. That’s very interesting. John did High Dose Cytoxan for SAA in June 2002. It really did him in. There’s not one body system/organ that was not effected. So after five years, he’s in a partial remission and we continue to see his blood counts creep up ever so slowly. So he’s on a low dose of Exjade to get rid of the iron. His FE is around 1800 now. Down from 4600. It’s troublesome for his tummy though and he has to stop it from time to time.

So we’re going to see this doctor who’s going to assess John’s overall health to see where his imbalances are and correct them if possible. So if we can restore hormonal balance, get rid of heavy metals, etc, to improve his overall health.

John said he doesn’t remember what it feels like to be normal anymore. He’s made great progress over the past five years and this doc will look beyond the SAA and age in this asssessment. Too many times docs attribute everything to the AA and we all know you can have more than one thing wrong with you. They intimate ” well at least you’re alive”. That is true and we are grateful for that; but that doesn’t mean we should stop trying to achieve optimal health.

Thanks again for sharing the experience.

Marlene

[Mary4Mike]

Hello Marlene,

I think it is wonderful that you are going to see a doctor that will look at the complete picture of John’s health. I agree that we should never stop trying to improve our quality of life. This is the exact reason we had heavy metal testing done. There are small things we can do to have a healthier lifestyle. For instance, we distill our water.

I would be glad to hear about the hormonal balancing. I am doing that myself (bioidentical hormones) with wonderful results. This is another avenue I would like Mike to try, if only to feel better.

One really has to be proactive when it comes to our health.

Keep in touch about this,

Mary

[Mary4Mike]

Shellbivens,

Thanks for the email on chelation. No, Mike has not begun chelation therapy. We have not ruled it out, but it isn’t in his plans for the near future. He is just finishing up his 4 month trial of Revlimid which, disappointedly, did not work for him. Next on the agenda is to not take anything and see where he levels off at (doctor’s idea). He is planning to begin Dacogen in December. He had a port put in a couple off weeks ago which has certainly made txs easier and will be better with the Dacogen IV’s. It will also help when he does do the chelation therapy. I will let you know when he begins that.

What is your dad currently doing for treatment? Where are his counts at? Give us an update on him if you would.

Thanks again for the interest.

[Mary4Mike]

Marlene,

Looking over these back posts, I wondered what John found out about his heavy metal levels and if he looked into hormone balancing. Is he going to do chelation therapy?

Please give us an update and I hope all is well with John and you.

[cherylm]

Hi all; I actually just got a call from my mom. She is at the onc with my dad. His levels are all down again and the doc said too much iron from all the transfusions. She is supposed to give him an oral med but my mom couldn’t remember the name. The doc knows I keep track of everything so she is sending me some info home. I wonder if it is going to be the oral chelaton. My dad is currently on Vidaza. We were hoping to start round 5 toady but his counts are too low. So instead he got a unit of blood and some platelets. Another unit tomorrow, then they should be able to start round 5. He just had a port-a-cath put in 9/21. I’ll post again here once I find out what he is going on. My mom said the doc said it was very expensive and she had to check his insurance. We’ll see….

Cheryl

[Mary4Mike]

Hello Cheryl,

I am sorry to hear that you dad’s levels were down today. This disease really takes you on a roller coaster ride. I have got to think that your dad will be going on Exjade, the oral iron chelator, and yes, it is expensive. I hope his insurance will pay for it – some do. My husband took Vidaza for a year and it kept him tx free during that time. He also had a port put in just about the same time as your dad. What a difference it makes for IV procedures!

All the best to you and your folks.

[marlene]

Hi Mary,

Well we just got back from doing a heavy metal challenge chelation session. John’s first 24 hour toxic urine test came back a little too good to be believed. So the doc wanted to make sure that John is not holding onto heavy metals. Hence the challenge. He gave him DMPS and EDTA today and now he needs to collect his urine again for 24 hours. We’ll know better after the 18th of October. We also found out that his testoterone is very low, as is his growth hormone. To add insult to injury, he thinks there’s some infection somewhere in his systems. And lastly, some labs came back indication hypercoagualtion of his blood. YIKES! This is a guy with 49K platelets. But then I was reading where a hidden infection can cause this.

I’m afraid to go back for the final review/result. I don’t think I can take any more “news”.

Anyways….thanks for asking and I will post when we get some solid results. BTW….we halted the Exjade for all these tests.

Marlene

[Mary4Mike]

Hello Marlene,

Wow, DMPS and EDTA in one day! I am sure you are aware that these are the chelation drugs that are used for chelation, so he basically got a chelation treatment(s) today. DMPS is used for mercury removal and EDTA is used for lead removal. Of course, other mineral/metals are removed in the process. DMPS is the one that really wiped Mike out for a couple of days. Make sure he drinks plenty of water. As far as the low testosterone and HGH levels, that is “normal” for everyone as we age. Are they planning to supplement him?

Don’t be afraid to go back for the results. If he has an infection lurking somewhere, hopefully they will find out and treat it. This all has to be for the betterment of his health. I can understand going off Exjade while doing all this testing.

Mike had an appointment yesterday with his hema/doc for his monthly check up and we were pleasantly surprised to learn that all of his blood counts are rising, not alot, but not going down as they usually do. We were expecting to end the Revlimid (4 rounds) and go on from there, but now the doctor wants to try another round and see what happens. This may be an answer to our prayers.

Keep me up to date on John’s progress!

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