Dr. C in Missouri

[JBJBJB]

Low Free Protein S

 

Kim, et al.!

I remembered you mentioned that a lot of patients with Lyme disease have some problems with protein S or C deficiency. I have to repeat my protein S test because low level of free protein S free (50) and the repeated test was 44, even lower. I learned that lower free protein S is not due to older age. Could this be due to inflammation if it is not from genetic heritage?

What I have is decreased Protein S activity: low levels of free Protein S, normal levels of bound Protein S. :headbang:

I have noticed my veins are very dark. I feel heavy on my legs. I do noticed a small area of venous thrombosis around my ankle area. It is just the very beginning of the venous thrombosis formation, I assume.

Kim, is this the Lyme disease package deal? Why did Dr. C say most of his Lyme patients have this? Could this be disappeared once Lyme disease is in remission? Do you know what type of deficiency most of the lyme patients have?

In addition to Sauna, should I started any other treatment? I called Dr. C's office and left message.

Thanks Kim and others who can help me understand this.

JB

 

 

  

[JBJBJB]

I also want to add that due to protein S problems, pulmonary embolism could also happen, which could cause pulmonary hypertension. Based on what I read,.[/color]

Several patients have mentioned that they had pulmonary fibrosis and after AP, their fibrosis were gone!!!  I am wondering could their “fibrosis” be pulmonary embolism??? In other words, pulmonary embolism could be treated but pulmonary fibrosis cannot be cured. Am I correct?

My pulmonary specialist “insisted” that I have pulmonary fibrosis. However, my second opinion thought they were bronchiectasis. Now, I am trying to connect the dots….. could both be wrong because I have low level of free protein S which caused pulmonary embolism?

 [/color]

Hmmmmmmmmmmm, a lot of to think.

 

 

 

 

 

[JBJBJB]

I also found my darkened skin color could be due to Protein S deficiency. See this picture I found out from the internet. Now I am thinking perhaps Michelle's mom and I both have this deficiency. If I press hard on my dark arm, the normal color comes back.

[Kim]

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

Low Free Protein S

 

Kim, et al.!

I remembered you mentioned that a lot of patients with Lyme disease have some problems with protein S or C deficiency. I have to repeat my protein S test because low level of free protein S free (50) and the repeated test was 44, even lower. I learned that lower free protein S is not due to older age. Could this be due to inflammation if it is not from genetic heritage?

What I have is decreased Protein S activity: low levels of free Protein S, normal levels of bound Protein S. :headbang:

I have noticed my veins are very dark. I feel heavy on my legs. I do noticed a small area of venous thrombosis around my ankle area. It is just the very beginning of the venous thrombosis formation, I assume.

Kim, is this the Lyme disease package deal? Why did Dr. C say most of his Lyme patients have this? Could this be disappeared once Lyme disease is in remission? Do you know what type of deficiency most of the lyme patients have?

In addition to Sauna, should I started any other treatment? I called Dr. C's office and left message.

Thanks Kim and others who can help me understand this.

JB

 

 

  

Hi JB,

I think my test was different from the one you had.  My hypercoagulation test was done by Hemex Labs and it was the MOCHA panel which tests for Fibrinogen Activity, Fragment 1+2, T/AT Complexes, Factor II Activity.  I tested high in 3 of the 4 categories and the 4th was borderline, which is why Dr. C. wanted me on Heparin (which I didn't do).  Luckily, I was able to get my thick blood thinned out and into the low-normal range with Neprinol and sauna, and of course, abx. 

It's very rare now that I have edema problems, and now it usually can be attributed to a bad diet that will reverse when I eat clean again.  :doh:

JB, I'm worried that you aren't giving each new thing enough time to work.  If that is the case you'll never know what is working and may be giving up on the very treatment and solution you are seeking.  There hasn't been one single thing that I've done that has worked immediately, all have taken time. 😕

Take care…..kim

[JBJBJB]

[user=40]Kim[/user] wrote:

JB, I'm worried that you aren't giving each new thing enough time to work.  If that is the case you'll never know what is working and may be giving up on the very treatment and solution you are seeking.  There hasn't been one single thing that I've done that has worked immediately, all have taken time. 😕

Take care…..kim

Kim,

I have been faithfully following Dr. C's order except I have not taken the hydrocortisone he subscribed for me. I have been having huge pain problems and my body seems to be more swelling than ever. My arms and hands are dark and also the veins are darker. My wrists are very warm to touch. I have chills and also recently my hip joints are also on fire. Ever since I am on Flagyl, I have problem sleep each night. I also have out of controlled yeast and tons of rash. On top of all these, my weight is keeping going down. I have no appetite. I know this is part of Flagyl's side effects.

What I don't understand is perhaps Flagyl is making protein S even lower. I had it tested before I started Flagyl, just after 3 weeks on Flagyl, the free protein S went down 6% point. That's a lot to go down within such short period. I have been telling people that my fingers are feeling like about to bust. I bet my ESR is 100…. now:headbang:

I am doing research on Vitamin K which may help to increase protein S. 

No, I am not quiting, I am trying to figure out what's been going on.

I am hanging there.

 

[JBJBJB]

Kim,

Are your arms, hands and chest areas are blue (or dark)? Are your veins dark purple color? Perhaps we are not talking about the same tests but they are all about blood clottting.

One thing I have been reading on is Vitamin K may play a role of protein C and S deficiency.

” In the low group clotting activity gamma-carboxy protein C, free protein S, and protein C activity was significantly decreased to a minimum on day 2 or 3, and increased in parallel after vitamin K administration. “

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1590375/

What I tried to find out is if high level inflammation could also lower the free protein S level. If that's the case, controlling the inflammation may normalize the protein S.

 

 

 

[Kim]

JB,

I know how frustrating it is when you have multiple issues that need to be addressed and not knowing where to start.  For me, getting my thick blood thinned out and circulating again was a huge step forward in my healing process.

Hope you can get some relief soon, JB.

Take care…..kim

[Kim]

Elaine,

Your son's a trooper!  Tell him congratulations on being able to do self-injections ~ it is NOT an easy thing to do. :doh:  Fingers crossed he'll get a big pay-off from this treatment.

Take care…..kim

[Maz]

[user=379]Elaine son w/MCTD[/user] wrote:

Just got back from visit with Dr C. He has added Claforan shots twice a day for my son. I am impressed, I watched my son give himself a shot today, his hands are as steady as a surgeon. Did you do these shots JB?

I was wondering how many hours you should have between the two shots per day. I am sure the farther apart the better. My son feels really rung out so it must be hitting something. He is to keep his other abx along with the shots for one month then see if he feels enough improvement to continue with it.

Hi Elaine,

Yes, I second Kim's “WOW!” That is terrific that your son is giving himself his own shots. I had to have bicillin IM shots for about 6 months and had to have a friend do them…mind you, they did have to be done in my rear, so not easy to see back there. I guess I could have just grabbed the syringe and blindly stabbed, but those bicillin shots sting like the dickens!!!

I don't know the specific answer you're seeking and putting a call in to Dr C's office should clarify, but I would think that spacing the shots as equally apart as possible is the way to go. If he's doing twice a day treatments, then every 12 hours seems the sensible way to go, much as one would do with spacing oral doses? So, if he gets up at 8am, then the second would be 8pm, for instance.

Please let us know how your son does with the clarforan shots…I've read they make a nice substitute for clindamycin IM.

Hope he's doing a bit better now, Elaine!!! Certainly sounds like he's in very good hands with Dr. C. 🙂

Peace, Maz

[JBJBJB]

[user=379]Elaine son w/MCTD[/user] wrote:

Just got back from visit with Dr C. He has added Claforan shots twice a day for my son. I am impressed, I watched my son give himself a shot today, his hands are as steady as a surgeon. Did you do these shots JB?

Elaine,

I am glad you had a good visit. He is really a brave soul to do the shots on his own. My diabetic boy still cannot give him shots even though he is going to be 17 this summer. It takes a lot of guts to do it.

When I was in the doctor's office, his nurse gave me ONE Claforan shot. It really hurt. He wanted to see if I was allergic to it. That was it. I was not allergic.

Was your son on Flagyl?

JB

By the way, do you know any injection device which can make life easier, like this one?

http://www.lyonbiopole.com/eveon-164-2.html

I hope at least I could get an insulin pump for 6 months if I have to give injection for such a long time.
 

[JBJBJB]

[user=379]Elaine son w/MCTD[/user] wrote:

Hi JB,

Wow, have not seen this new injection device! Interesting how it reads the tissue to make sure you don't hit a vein.

My son is still on flagyl 250mg on Mon, Wed, Fri. I am worried what kind of herx my son may have from twice daily shots??? I know with clindy IV he doesn't really herx, it usually just makes him feel better.

So was it the pain that steered you away from trying the claforan JB, or did you want to try flagyl first? If this doesn't work for him, I think Dr C wants him to get a port. The problem is finding a local doc to do the orders.

How are you doing with the flagyl?

 

I am not trying to be a whinier, but I have not been doing well. I am worst than Jan 2007. The swelling is a huge issue. All the joints are on fire and muscle weakness and extreme fatigue, plus sleepiness. I also have a lot of yeast infection due to 750 mg daily Flagyl. Miserable.

I am doing Sauna twice a day now. I also ordered some MSM, plus I take Aleve each day to get by. I am so glad I finished all my academic work before I headed for Columbia.

However I do feel a lot lighter in my lungs. I can breath better.

Dr. C wants to put me on Claforan shot if Flagyl will not work. I got one shot that day and I felt instant “better”, perhaps it was in my mind. What is the port?

I am also running a problem of lower level protein S. I called his office. It's been over a month since I retested it and his office told me they never got the confirmation test. So my lab sent it again. I will see what Dr. C will tell me.

 

[Roz]

Hi JB,

Do you notice a pattern, of the pain and inflammation being more around every 4 or 5 weeks?

Big Hugs, Roz

[Kim]

JB,

Twice a day sauna doesn't sound like a good idea to me.  It would be hard to replace all the essential things you've sweated out and you could get badly dehydrated, not to mention how exhausted it will make you when your body needs that energy for healing.

Take care…..kim

[JBJBJB]

Elaine

Check this injection port out.

http://www.childrenwithdiabetes.com/d_06_312.htm

It can be put on the butt. This injection port stays there for three days.  I am going to do this way if I have to get shot twice a day.

Kim,

I get out as soon as I start to sweat. It is only about 20 minutes. Recently my body is icy cold and my hands and feet are also having Raynauds' attack. A lot of chills… so I drink hot ginger tea before I get to the Sauna. It works well.

Roz,

I have not noticed the pattern. I feel fine when I am on Aleve. I can only sleep 2 hours a night, it drives me nuts.

 

[JBJBJB]

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.   

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