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» LymeNet Flash » Questions and Discussion » Medical Questions » Had to stop IV treatment - what can we do?

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Author Topic: Had to stop IV treatment - what can we do?
momlyme
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LLMD called this morning and WBC and ANC are down below acceptable levels again. Stopping IV treatments for second time.

What can we do diffently?

First pause was due to drops in WBC and ANC days 19-23 (5 days). Started Waiora supplements Agarigold and Natural Cellular defense. #'s went up significantly in those 5 days.

Then went on half dose IV for 7 days. stayed on supplements.

We had (false) hope... because these tests went up significantly in those 7 days. The doc (and I) were thrilled and we put him back on full treatment.

Day 37(today)... WBC and ANC numbers are worse than before. That tells me that the Agarigold was not all I had hoped it was...

How can we keep him stable? He is just so sick and doesn't seem to be able to tolerate any of the medicines which are supposed to get him well.

LLMD mentioned seeing a hematologist...

LLMD is consulting with Dr J. - ct and Dr. B - NY... calling me back after these consults.

Perhaps the answer is half dosage as his body seemed to tolerate that.

Any thoughts?

[ 12-07-2010, 10:01 PM: Message edited by: momlyme ]

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

Posts: 2007 | From NY/VT Border | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
sk8ter
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Has he been tested for genetic detox mutations? Genelex labs in WA can test all his liver pathways to see if he can detox properly or not. They will then give dr a list of drugs that he should or should not take and at what dosage. This is a genetic defect and nothing will correct it. Not like KPU. But has he been tested for KPU also? The XMRV test is another test he should have as this effects the WBC too. Just a few thoughts.
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momlyme
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Thanks sk8ter. I am looking into that right now. I found Genelex labs online at
http://www.healthanddna.com

No he hasn't been tested for KPU or XMRV. At least I don't think so. Does he need to be off abx for these tests? Where are these tests done well?

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

Posts: 2007 | From NY/VT Border | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
momlyme
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I just called the toll free number for Genelex labs... talked to a man that was very knowledgeable. Looks like they have seen difficulty metabolizing drugs for lyme disease before.

Looks like this is a definite possibility... hopefully my insurance covers the testing. He says insurance covers 70% of the time. He also gave me prices if they don't cover... eek. I hope it's covered!

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

Posts: 2007 | From NY/VT Border | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
momlyme
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I would really appreciate any other suggestions. We are off to ND to do muscle testing... maybe she will have other suggestions.

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

Posts: 2007 | From NY/VT Border | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
momlyme
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bump for help?

Anyone experience this yoyo-ing? What did you do?

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

Posts: 2007 | From NY/VT Border | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
TF
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I experienced yoyo-ing.

When my white blood cell count went too low while on oral antibiotics, my now famous lyme doctor put me on Transfer Factor.

In 2 weeks, my count was up, so I didn't have to stop meds.

Later, the count went down again, so I had to go back on the Transfer Factor. This made the count go up again.

The third time my count went low, doc said to just go on Transfer Factor and stay on it until end of treatment, which I did.

Thanks to Transfer Factor, I never had to stop treatment.

The Transfer Factor I used was made from bovine (cow) colostrum. That is the first "milk" a mother produces.

It worked for me! You can buy it on line. Why not give it a try. It is mentioned in the Burrascano Guidelines under "Supplements."

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
momlyme
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I did some research on the board and found many old posts. I found mixed feelings over the years on the effectivness of TF. This post is particularly informative and leaves a lot of questions on the safety:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/79003?#000008

I would love to hear some more opinions from people who have used Transfer Factor before I seriously consider giving this to my son. Plus, the investment is ^$100 a month for both TF's Dr. B recommends.

If you use the Researched Nutritionals from Dr. B's guidelines...
Do you get the Lyme specific or the Immune boost?
Or Both?

Thanks in advance for your help!

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

Posts: 2007 | From NY/VT Border | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
BoxerMom
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Have you read this thread?

Lactoferrin is much cheaper than Transfer Factor.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/101457?

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 - Must...find...BRAIN!!!

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momlyme
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Thank you BoxerMom... that looks promising.

Do you have a brand you are happy with?

I just read a bunch of reviews at iherb.com
and have chosen Symbiotics New Life Colostrum Plus Lactoferrin-Colostrum Formula based on those reviews.

The price is better over at vitacost so I have it in my shopping cart. I will probably place the order tomorrow... I have a bunch of things I need to order...

Would love to hear yea or nay on the Symbiotics brand!

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

Posts: 2007 | From NY/VT Border | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
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Another option which Buhner usually suggests is Eleuthero -- Herb Pharm brand tincture is the recommended source.

Hubby defintiely felt it gave him more energy -- at the time his white count had gone back to normal after treating bart so don't know what if any effect it had on his immune system.

Bea Seibert

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BoxerMom
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It looks fine. I take the Ecological Formulas 100mg lactoferrin. It's the one my LLND carries.

--------------------
 - Must...find...BRAIN!!!

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momlyme
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Thank you Bea, I will put that in a file for future reference. Right now, I don't want to add another tincture because of the alcohol... he is on one with teasel root already and I try to evaporate most of the alcohol - but I worry that I am compromising the quality.

BoxerMom, I went with your brand. Found it on ebay and actually did my whole order through the same seller. Saved a ton on shipping and she has pharmaceutical grade supplements for less than vitacost.

Thanks for all the help!

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

Posts: 2007 | From NY/VT Border | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
2young2dieMom
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Try norweigan shark liver oil from swanson vitamins. they give it to cancer patients whose WBC is low. I'm trying it now, my WBC is 3.3 so i hope it helps. I was dxd with ALS is going off meds is a death sentence.

--------------------
Dxd ALS 3/2010
Dxd cllinical Lyme 4/2010
Positive for Protomyxzoa but absolutely nothing else in Igenex

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momlyme
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Thanks 2young... I put that one in my file.

Let me know if it works for you.

I ordered the Ecological Formulas 100mg lactoferrin and am keeping him on the Waiora supplements he has been taking. Maybe the combination will keep him stable. Maybe we will have to add something else, who knows.

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

Posts: 2007 | From NY/VT Border | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
   

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