I'm seeing my doctor tomorrow who told me test results show I have hypercoagulation. He told me that he'd be explaining about the shots I'd have to give myself and I think it will be Heparin. Has anyone had this treatment?
Posted by pab (Member # 904) on :
My kids used Lovenox for hypercoagulation. It's a type of heparin and it's an injection. They were seeing a hematologist for the hypercoagulation.
My husband grew up in Janesville, WI.
Posted by Need Lots of Help (Member # 18603) on :
I haven't, but I want to try it. My FFC told me I had hypercoagulation.
I saved a post from ProHealth because it had some good information in it. I will copy only the portion relevant.
From the post....I started heparin therapy on Mon Oct 15th. I inject a total of 10,000 units per day split into two shots. My brain fog improved within 10 minutes of the first shot. I didn't wake up with any fibro pain the next day. The pain starts to come back about an hour before it's time to do the second shot of the day.
One physician has done testing with over 400 patients and found evidence of infections in 100% of the patients with hypercoagulation. That is encouraging! Research has shown the tender points of FM are low in oxygen. Too much fibrin interferes with the blood vessels ability to transport oxygen.
To avoid bruising, I ice my abdomen for 5-10 minutes, pinch an inch and flatten my skin out to rearrange the layers of tissue, inject below the pinched inch and then ice again for 5-10 minutes more.
I need to go weekly or biweekly to get PT checked until the correct treatment dose is found. I'd like to get the hereditary panel done to see if I have a genetic problem with fibrin.
After getting a PTT and CBC, my dose of heparin was increased from 5,000 units twice a day to 7,000 units twice a day the first week. The second week it was raised to 9,000 units. The third week was 11,000 units. The fourth week it was 13,000 units. That was too high based on my labs so the dose was lowered to 12,000 units.
I love heparin! My muscle pain is better. My brain fog is greatly improved. My fatigue is better. My neuro symptoms are better. Before heparin, I felt sluggish and now I have too many projects that I want to tackle but no time to do them all.
I'm conviced that the reason why my candida IGM titers would not come down after antifungal treatment is because candida is hiding in the fibrin of my blood. I'm looking forward to getting rid of some of my infections. The only way to know is to get them retested but finding a doctor to run these labs will be difficult.
Posted by Lymetoo (Member # 743) on :
I used it for several years. I took the shots until they began causing itchy round dollars on my belly! Then I went to the troches.
I think heparin helped me A LOT!!
There are studies that have shown it also helps get rid of babesia.
Posted by Jellybelly (Member # 7142) on :
I have used it for severeal years, took a break and am back on now. I like Tutu believe it makes a major difference in how the abx are absorbed. I did have hypercoagulation too, but am now taking it because it is believed that it balances Th1 and Th2 parts of the immune system. I am at this moment wrestling with EBV and HHV6. As Tutu said there are also studies, that indicate it destroys babesia.
Recently after seeing Under OUr Skin, at the end that researcher and his name escapes me, discovered bio film surrounding the spirochetes which makes it very hard to kill. Guess what is known to cut biofilm? Yep, heparin.
I managed to get the Lyme uder control several years ago, using a minor fraction of the abx most people are given. As far as I can tell the Lyme issue is still dormant. Now if I can juyst gt a handle on the EBV and HHV6!
Posted by imagine2 (Member # 3136) on :
Is it dangerous to start aggressive lyme treatment with a known hypercoagulation problem? Shouldn't the coagulation issue be resolved before treatment?
Also, don't the agents used for hypercoagulation cause severe herxing?
Thanks for any responses.
Posted by Hoosiers51 (Member # 15759) on :
I am considering this......I have an LLMD appointment tomorrow and I am going to bring it up.
Are the shots something that I could give to myself at home? Are they IV or IM?
I'm assuming the troches are good, but not as effective as a shot? (that seems to be the way it is with most oral and transdermal vs. shots)
Thank you!!!!
Posted by Jellybelly (Member # 7142) on :
Being aware of the herxing issue is important and yes you can herx hard when on heparin. The heparin itself I don't think causes the more dramtic herx, but it is the fact that it strips away fibrin which cloaks the ketes making it hard for the abx to get to. Remove the fibrin and the ketes become easier targets for not only the abx, but your own immune syste.
From my personel experience I would suggest ramping up on the abx and not letting the herx get to severe which is very counter productive. I never was able to ramp up to high on the abx, but my recovery was profund compared to most who have been on abx for months if not years.
I did not have to take even one shot. My doc had the compounding pharmacy put it in a nasal spray and for both me and my daughter it worked very well. My hypercoagulation was quite severe and my daughter took it all the way up to a few hours before delivery of her 1st child. Haven't ever really talked to a doctor who was conserned with the safety issue at the low dose we are given.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by imagine2: Is it dangerous to start aggressive lyme treatment with a known hypercoagulation problem? Shouldn't the coagulation issue be resolved before treatment?
The bacteria make the hypercoagulation worse... so you can't just wait around 2-4 yrs while getting treated. Treat both and get well faster. (see Jellybelly's info)
Also, don't the agents used for hypercoagulation cause severe herxing?
It can cause more herxing, but you can manage your own herxes. ( see what JB posted )
Hoosiers.. They're subQ into the stomach.
Supposedly, the troches are not as effective, but I see it as a non-issue since your PTT is regularly checked and if the level is not right the heparin is increased.
It's not as easy to adjust the troches though! You have to add a 1/2 tablet or decrease, etc.
Posted by Need Lots of Help (Member # 18603) on :
Jellybelly,
Awesome information about compounding it in a nasal spray......That would be awesome!!
I don't like giving myself shots, but a nose spray that is effective would be great. I will definitely ask for it during my next visit!!
Shalome
Posted by Nutmeg (Member # 7250) on :
Does heparin reduce CRP (C-reactive protein)?
My Lyme-friendly MD keeps pushing for me to do the shots to bring down my CRP.
I keep telling him I will think about it, but I don't. The idea of reducing brain fog and muscle pain has me interested now.
Has anyone had any side effects from heparin, aside from the bruising (shots) and herxing?
Thanks, Nutmeg
[ 04-01-2009, 02:15 AM: Message edited by: Nutmeg ]
Posted by Lymetoo (Member # 743) on :
All I had were side BENEFITS, minus herxing and bruising.
Definitely helped pain, fatigue and brain fog.
I would THINK it would work on the CRP. So will mangosteen. Get the good stuff.
Posted by Nutmeg (Member # 7250) on :
Hi Lymetoo,
Glad you had improvement from the heparin. Pain, fatigue, and brain fog are my main symptoms.
Ah, there's that "m" word again...LOL! I've been drinking mangosteen juice for over 4 months. Missed a few days here and there.
My CRP dropped a few numbers (17-something to 14-something) when drinking the mangosteen, in addition to all my enzymes and stuff.
My CRP finally went down from the teens to 7-something when I started using a Rife machine 2 months ago, but then it went back up to 10+ a couple of weeks ago while I was still Rifing.
My MD is very concerned about the CRP number, so every time I have it checked he calls me or has me come in to try to get me to take the heparin shots.
I thought low-dose naltrexone, deplin, and the AI drops would do the trick if I could sleep better and get rid of some toxins.
I guess I need to consider the heparin eventually.
Thanks very much, Nutmeg
Posted by imagine2 (Member # 3136) on :
Is coumadin as affective as heparin?
Great information from everyone, as always!
Thanks so much.
Posted by Need Lots of Help (Member # 18603) on :
Jellybelly,
I sent you a PM. I wanted more information. I called my doctor so she could prescribe it to me. She didn't know what I was talking about. And, she uses a compounded pharmacy often.
Anyone else know about this?? Which pharmacy? I called ITC, which is where I get my compounded stuff from and they haven't called me back yet.
Thanks, Shalome
Posted by Need Lots of Help (Member # 18603) on :
Bump,
Please jellybelly ( or anyone) help!!! On the compounded heparin nose spray.
Shalome
Posted by Jellybelly (Member # 7142) on :
Sorry, been crazy busy. You can get the nasal spray heparin from: University Compounding in San Diego. Phone: 800-985-8065. They do ship and it is very reasonably priced, I think about $45.
I have recently met an older lady who's body has been ravaged by Lyme. She had the cath in her chest for 10 years for abx. Is seeing a well known LLMD in So. Cal. I recently encouraged here to try heparin, she did, and is quite impressed. It was something her LLMD had never recommended to her, even though she knew of it. Even in this regard we may need to once again help our doctors to learn of some things they are not familiar with yet.
Posted by Need Lots of Help (Member # 18603) on :
OMG, thank you so much for answering!!!
I think it will make a huge difference for me. And I think I need it while I am on antiboitics!!!
Thank YOU!!
Shalome
Posted by Need Lots of Help (Member # 18603) on :
Since Jellybean said that many people were asking about this, I wanted to let you know what my compounding pharmacy said.
They do not have the nose spray but they do have heparin in a sublingual form. They said with heparin, you have to avoid the stomach and acids, that was why you had to take shots. But now the compounding pharmacy has it in a sublingual form.
Yeaha!!
Shalome
Posted by mammakitten (Member # 18913) on :
What specific compounding pharmacy has Heparin in a sublingual form?
Posted by Need Lots of Help (Member # 18603) on :
Igenex compounding pharmacy
Posted by mammakitten (Member # 18913) on :
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