Dr. C in Missouri

[Maz]

[user=266]JBJBJB[/user] wrote:

Hi all,

I also want to add that my frequent skip heart beat problem is almost gone. Knock on wood, I hope it won't return (after I mention it here).

I hope this “heaviness” of my lower limbs and hands will be gone soon. I can hardly walk more than 500 yards. I feel all the blood went down to my legs and feet. When I lay down flat, I feel a little better.

So far I have lost about 7 pounds after I started Flagyl.   

JB, I suffered from the same heavy feeling in my legs for a good year or so on Lyme treatments. It was awful and I empathize. Fortunately, that feeling is gone now, but I remember going to see Lynnie in NYC when she was over from Auz and was so afraid I'd be able to walk from her hotel to the restaurant a few blocks across the top of Central Park.

Are you getting fevers, at all, or is it mainly just Raynaud's? If fevers, it's not a good idea to do sauna, at all, and this could harm you. I remember reading this in my instruction booklet, if that helps. Also, my LLMD told me to restrict sauna to every other day and only do 30 mins at a time at 125f max, as more than this is too much. Hope this helps a bit?

Peace, Maz

[JBJBJB]

Maz,

Thanks for telling me your story. I was very worried especially I found my free protein S was very low (44% versus 80%). My hands and body got even darker when I move around.

I will remember not over do with Sauna. I guess I am too anxious. I also drink tons of warm water with lot of Ginger and ginseng to get my blood circulated.

I don't have fever yet, I did have low grade fever several times but most of the time, my body is icy cold.

 

[nspiker]

JB,

I'm sorry you are having a rough time.  This silly disease is like ridin' a roller-coaster, one minute you're doing better, then hold on, it all changes.

I know nothing specifically about Protein S, except that it is something in blood coagulation.  What are you doing for thick blood?  Are you using fibrolytic enzymes, and how how much and how often?  They made all the difference for me.  Even now that I've been on them religiously for a year, I can tell when my leg gets tight or when my blood gets darker during IV's, and I know I have to up the enzymes.

I'm sure you're already addressing this issue, and researching the heck out of it. :headbang:
nancy

[JBJBJB]

[user=1552]nspiker[/user] wrote:

I know nothing specifically about Protein S, except that it is something in blood coagulation.  What are you doing for thick blood?  Are you using fibrolytic enzymes, and how how much and how often?  :headbang:
nancy

Nancy,

Thanks for the shoulders for me to “cry” on. I am very thrilled to get my first package of MSM today. I sure hope it will get my inflammation under the control. I also have added many other supplements. If I'd space out each med and supplement, I take one every half hour!!! Tons of stuff.

No, I have not done anything about the thick blood except drinking ginger and gingsen tea with carrots and other herbal fruit. They are really helpful. My cold body and hands got warmed up and my veins were not as dark. I also read Vitamin K2 is very helpful to raise the free Protein S (which I am low). I am waiting for Dr. C to call me. If he is not going to call me during the next two weeks, I am going to buy some Vitamin K (MK-7) to give it a try.

Mean while, I am truly inspired by A Friend's suggestions, so I am going to keep my body PH balanced.

Thank you so much for thinking of me!

JB

 

 

 

[Kim]

JB,

You can schedule a phone appointment with Dr. C.  You have to pay for the time, but at least you'll know when to expect the call.

I sound like a broken record, but I swear by Neprinol/Serrakor NK for thinning blood.  Seldom do I think about my Raynaud's now.

Take care…..kim

[nspiker]

Kim wrote;

I sound like a broken record, but I swear by Neprinol/Serrakor NK for thinning blood. Seldom do I think about my Raynaud's now. 

JB,  I have to echo what Kim said about the fibrolytic enzymes.  I am taking Thorne Bromelain and Allergy Research Lumbrokinase.  Bromelain is inexpensive, but I noticed a difference with the first pill.  I take it on an empty stomach with my minocin.

The solution for these kind of blood coagulation issues is heparin, and these enzymes work in the same manner.  Just my humble opinion, but give them a try, and see for yourself what a difference it makes.:blush:

nancy

[JBJBJB]

Kim and Nancy,

I will look into it for sure. One thing has been holding back for me not to pursue this supplement is because I have diarrhea pretty often. I worry this supplement will make it worse.

By the way, today it is my second day to take MSM (1,500mg). I am feeling the differences. I have a conference for whole day from 9:00 AM, and now it's 7:05 PM. I am waiting to have dinner with my research group. It's a long day for me (will be home around 10:00 PM)… I only feel a little stiff (due to sitting for whole day) and not a lot of pain and heaviness. I am really impressed with this MSM. The conference will end on Saturday. I hope my body will hold.

What is the maxi dosage for MSM? I am attempted to take twice a day (3,000 mg).  
:dude: JB
 

 

[Kim]

JB,

Good luck with the MSM.  I haven't taken it so can't help with dosing, maybe others will share their magic formula.

Take care…..kim

[stile RA]

[user=1552]nspiker[/user] wrote:

The solution for these kind of blood coagulation issues is heparin, and these enzymes work in the same manner.  Just my humble opinion, but give them a try, and see for yourself what a difference it makes.:blush:

nancy

Hi Nancy.  Just curious if you know if Neprinol is better than heparin or do they both work about the same?   Cindy

[nspiker]

Hi Cindy,

Neprinol is a fibrolytic enzyme supplement that is purchased on-line.  It is not prescription, and has no harmful side effects.  I know, Kim and Maz and others use Neprinol, and love the product. 

Heparin, to my knowledge, is only used intravenously. 

They both accomplish the same thing. Used on an empty stomach, fibrolytic enzymes  thin the fibrin and sticky blood.  Maybe Kim can chime in here, but if I remember correctly, her doctor wanted her to go on heparin.  She chose to try Neprinol, and it has worked for her.

I found this explanation of how Neprinol works.  It also compares and contrasts Neprinol to traditional blood thinners.
http://www.fibromedica.com/neprinol-?gclid=CIaGqYrtn6ICFSCjiQodvCOryA

nancy

[Kim]

Hi Cindy,

I'm sure Nancy will respond, but thought I would too with my experience. 

My hypercoagulation test came back high and my LLMD wanted me to start twice daily heparin injections which I had concerns about.  I asked for a few months to try and do it “my way” with Neprinol and sauna which worked very well and I was able to avoid the Heparin.  I could control the dose of Neprinol and the sauna did wonders for thinning blood and improving circulation, all without the risks of Heparin.  Another note on Heparin, in addition to the twice daily injections you have to go the lab constantly for monitoring………even more needles, more money and more time. :crying:

Take care…..kim

[stile RA]

Thanks Kim and Nancy for the info.

[user=1552]nspiker[/user] wrote:

JB,  I have to echo what Kim said about the fibrolytic enzymes.  I am taking Thorne Bromelain and Allergy Research Lumbrokinase.  Bromelain is inexpensive, but I noticed a difference with the first pill. 

 

Nancy,  does the Bromelain do the same thing as the Neprinol or do you take it for something else?  Cindy

[Kim]

Looks like Nancy and I were typing at the same time.

Elaine, yes the effective dosage does seem high and is definitely higher than what's on the label.  I never got as high as 18/day, but some days did get up to 12, more often it was around 8-10 in split doses and always on an empty stomach.  Those high doses are recommended starting doses and then you taper down.  I had a knee replacement about 5 years ago that had a big, wide, ugly scar, and within two weeks I could see that scar visibly soften which I found very impressive. 😯  Again, I did it along with the sauna so it was a one-two punch.  My Raynaud's also improved quickly and now is almost totally gone.  Good stuff!

Take care……kim

[nspiker]

Cindy wrote,

Nancy, does the Bromelain do the same thing as the Neprinol or do you take it for something else? Cindy

I take bromelain for sticky blood, reducing inflammation, dissolving biofilm, and it even potentiates the antibiotics.  I take two pills, first thing in the morning, on an empty stomach, with minocycline.

http://www.thorne.com/media/alternative_medicine_review/monographs/BromelainMono.pdf

When I first came to RB and complained of my leg/s being heavy and stiff, fibrolytic enzymes were recommended.  I started with bromelain, and was so happy with it, I haven't switched.  Honestly, the first pill I took made a difference for me in the tightness of my leg.  I take about six a day.  I then added lumbrokinase, but only about two a day,  because it is another fibrolytic enzyme that busts potential blood clots and fibrin. 

Neprinol is the whole combination, wrapped up in one, and more.

nancy

[JBJBJB]

Kim, Nancy, Parisa, Elaine and all,

I have read a lot of stuff on low free protein S deficiency. My protein C and S are both normal. One of the major causes is inflammation. I am sure my MCTD would affect free protein S.  I don't know if Vitamin K1 and K2 (MK7) can help.   If you find any research on this issue, let me know please.

I am wondering if I should go and see a hematologist or oncologist for this? 

Kim, I don't know if you have puffy sausage fingers. I have puffy face, puffy sausage fingers and  purple skins due to poor circulation. I also have several areas in my body and face which have fine spider veins.

Perhaps I should go back to plaquenil for a while to bring down the inflammation, then test the free protein S level. If there is a high correlation, perhaps inflammation is the key….

 

 

 

 

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