Sticky Blood? Need advice

[Nonnie]

About a week ago I was getting an IV infusion I get every two weeks, and every line clotted before the nurse could flush.  The nurse was very concerned and I called every doctor I see (Internist, AP doc, and the doc who treats my genetic condition called Gaucher's disease) and each doctor said basically, “don't worry about it, there's no test for coagulated blood.”  I'm concerned, I also noticed tons of clots with my periods.  I have been on Mino for 3 months and feeling a lot better for the most part.

Some history: I started mino because of CREST symptoms and I also showed one positive test for Lyme.  I haven't completed igenix testing yet but I plan to. 

I live in AZ and see Dr. F but am looking for a new LLMD–any suggestions?  I don't know what to do exactly about my possibly coagulated blood since every doc. seems to be brushing it off.  I am going to schedule an appt. to see Dr. F but am not happy about his treatment toward patients.  He won't even return a phone call.

Anyway, should I be looking for a hematologist?  Or just a new llmd?  Anything I should do in the meantime? 

[marypart]

I think hypercoagulation is  considered an issue in Lyme.  You could ask about it over at lymenet.org  (except I think that board is having techinical problems right now… because I haven't been able to get in since Friday.)

I think your LLMD should know something about it.  

Mary

[nspiker]

Nonnie,

Are you seeing Dr. F. in AZ, or Dr. F. in CA?  I see Dr. F. in CA for AP, and he does extensive coagulation panels.  In fact, I just had another fifteen vials of blood drawn, mainly for coagulation puropses.  The lab they use is Esoterix (http://www.esoterix.com).

Thick, sticky blood is a symptom of chronic illness.  It comes with all these diseases, including autoimmune and lyme.  Are you taking a fibrolytic enzyme?  That could help tremendously!  I take Thorne bromelain, two capsules three times a day, on an empty stomach (before breakfast, before bed, and somewhere in between).  I also take lumbrokinase, which is often referred to as boulouke.  Many here take Neprinol and/or Vitalzym. 

Here is a synopsis of hypercoagulation.

http://www.digitalnaturopath.com/cond/C546009.html

nancy

[Nonnie]

thank you..I will look into those.  I'm not taking enzymes except digestive enzymes when I eat. 

I see Dr. F in AZ- as I understand Dr. F in CA is wonderful.

[Nonnie]

Can I ask where you purchase your enzymes–online or otherwise?

[PhilC]

Here is some more information for you:

http://www.anapsid.org/cnd/diffdx/hypercoagulation.html
http://www.drcharlescrist.com/hypercoagulation.htm
http://www.springboard4health.com/notebook/health_hypercoagulation_ill.html

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[nspiker]

Nonnie,

I buy Bromelain from National Discount Vitamins
http://www.nationaldiscountvitamins.com/details.cfm?Group_ID=40&Product_ID=5906

Lumbrokinase from Vitacost
http://www.vitacost.com/Allergy-Research-Group-Lumbrokinase/?csrc=GPF-713947748705&ci_src=14110944&ci_sku=713947748705

They have to be taken on an empty stomach.  Taking systemic enzymes made a huge difference in my symptoms, from the first dose.  I have stiffness in my legs and ankle, and immediately had relief.

Hopefully your LLMD or PCP could get this Esoterix coagulation panel done.  I know the blood has to be drawn and sent, the same morning before noon.

nancy

[nspiker]

Mary wrote:

You could ask about it over at lymenet.org (except I think that board is having techinical problems right now… because I haven't been able to get in since Friday.)

What's with both roadback and lymenet having problems at the same time??? 
nancy

[PhilC]

You might want to get your blood tested before starting on anything for hypercoagulation. That way, you'll be able to tell if what you are doing is working by getting tested again later on and comparing the results.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Kash]

Is hyperercoagulaytion the same as Leiden IV? I tested positive on the genetic test….

[nspiker]

Kash wrote:

Is hyperercoagulaytion the same as Leiden IV? I tested positive on the genetic test….

This is what is written by LLMD Dr. C. on the link from from Phil regarding Leiden IV

Inherited or genetic disorders may also predispose to blood clotting. Some of these hereditary defects include antithrombin activity deficiency, protein C activity deficiency, protein S activity deficiency, Factor II gene mutation, APC resistance (Activated Protein C resistance is also called Factor V Leiden deficiency), elevated lipoprotein(a) or Lp(a), elevated PAI-1 (Plasminogen Activator Inhibiter-1), and elevated homocysteine. Hereditary hypercoagulation test panels are abnormal in 66 percent of borreliosis patients, as opposed to about 25 percent of the general healthy population.

So, based on this information, hypercoagulation is created by Leiden Factor V.  That's how I interpret it, although I'm not familiar with this genetic marker.

I just looked at my Esoterix blood coagulation test, and they test for Factor V Leiden on the coagulation panel.  It is an inherited proclivity to hypercoagulation.

nancy

[A Friend]

Hello Nonnie,
Thought I peek at the posts today, and saw and read your post.  This is a subject that some time ago had much coverage over a several-year period on the board.  However, when the BB format was changed, the older posts could not be transferred.  The following information is information from an e-mail to myself back in 2007 — an update I believe.  I have quite a bit more articles and information on hypercoagulation, and Berg and Dr. Joseph Brewer, infectious disease specialist … they just happened to meet at a conference and visited and devised some procedures in these areas.  Hope what I'm pasting below ends up readable.  If not, I'll return to clean it up.  Sometimes long links cause problems with the text that follows.  AF

Edit:  Am adding this one, just found, before the longer e-mail below:
http://www.noaw.com/Hypercoag/Hypercoagulability.htm

Note about following references:  The references originally posted below have been deleted, as the links were no longer active.  A search using the words:  Hypercoagulation Berg Dr. Joseph Brewer found the following discussion with these two men's work, in a question and answer format.  Am hoping this link (which contains much information that the old deleted links had) will be helpful.  AF

 http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=385810

[Kash]

That is who did the test, esoterix. Had to go to a certain lab. I have had so many surgeries, even two last year, good thing is I didn't have any problems. I wonder, since it is higher with Lyme patients, will the numbers change and be less of a risk when I am well?

Thanks for the info….Barb

[Author]

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