posted
Is this stuff any good? I know it is more expensive but how does it compare to IM heparin? I am in the normal range but my LLMD wants me to be in the "higher" normal range.
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter does the sublingual lozenges. They made a big difference that was noticed at blood draw time.
You can herx because the blood is able to get the abx to areas it hadn't before.
I understand the injectible is dirt cheap. So if you have the nerve and no insurance to cover the lozenges, try it.
One drawback to the lozenges. It thins out the mucus lining of the stomach. My daughter had a BAD acid stomach from that, so she had to stop.
We're going to pick it up again.(I'm going to take it too, since my Lyme is mostly vascular)
How are you Byron?
Posts: 2903 | From AZ | Registered: Feb 2006
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ByronSBell 2007
Unregistered
posted
I may give it a try...
I have not been doing well at all, kinda falling down hill now. I've tried just about all the ABX out there for lyme with no improvement. Detox doesn't seem to help any and now I have come down with a really bad sinus infection that my dad had for 2 weeks.
It's getting really hard for me to hold on
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posted
Heparin helped me tremendously. Most of the time, I took the oral from the pharmacy he recommends. [I began with injections, but became allergic to something in the preparation.]
Now I take Rutozym and will switch to Vitalzym next month.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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ByronSBell 2007
Unregistered
posted
How didit help you? in what ways...
Also what were your test results before starting heparin, where you out of normal range?
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
yeah, you'll feel something is happening!
Sorry you are not doing well. You know. My daughter doesn't seem much better than she was two years ago.
But, when I do look back (and this is where I should've INSISTED we do a symptom chart) I see positive changes.
It seems we deal with new ones, or old friends, sometimes. She finally decided she needed to do something to move forward and is now taking pain meds and taking ONE oncampus college class.
After years of social anxiety, this was a huge step for her.
I don't know how long you have been dealing with this. But, if you were a sprinter, you need to wrap your brain around a marathon.
My daughter can certainly relate to your pain. When you have a life planned, and this sidelines you, it SUCKS.
Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Hi Byron
I used heparin for over 3 years straight and believe it to be a major player in my very long remission.
I did not take any shots at all, because by doc had a compunding pharmacy put the exact same some stuff into a nasal spray which worked perfectly for both myself and my daughter who was pregnant while on it.
My Soluable Fibrin Monomer was 21 (range 0-17) T/AT Comples (Thrombin AntiThrombin) was 32.7 (range 1.0-4.1)
In 3 months I was in normal range. At that point I went off the heparin and numbers went right back up and out of range. Went back on heparin and stayed for over 3 years, and also added minut amounts of Minocylcine, up to 25 mgs., every other day.
I herxed like heck, but was finally able to go off 80% of all meds. No pain, no headaches, no bone crushing fatigue, head clearer, not perfect, but the world seemed different as I was able to follow what was going on around me. Eventually I went off the heparin too.
I thought that maybe in the last 8 months I have been coming out of remission, but I am 50ish and that could be some of the problem.
I am back on the heparin, without testing, keeping in mind the dose is very low. It also has the side effect of likely destroying Babesia all on it's own and possibly Lyme. We do know for sure that it at the very least uncovers the pathogens, making them more visible to the immune system.
That is one very simple and fixable way these pathognes hide from both antibioitcs and the immune system....cloak themselves in the a thick blanket of fibrin.
My remission is still going strong and I have some new things to post about one of these days that seem like some positive progress that has been a very long time in coming.
In my now "normal" life, I am actually taking up golf and taking lessons!!! With my scoliosis and Lyme I always thought it impossible, and was very fearful of the pain, but after my first lesson, I didn't feel to bad.
Pinky finger was swollen like a suasage, and I was little stiff here and there, but not to bad
Kelly mentioned above that with here daughter it didn't seem like she was making any progress, BUT as she looks back over time, she definetly sees the changes. It was like that for me too, after the intial WOW of the heparin. When I turned pink in color and my extremeties warmed up. Then positive things were more subtle, like, the texture of my skin, it looked alive for a change.
If you or anyone is interested in the nasal spray, just leave a message here and I will send you the # of the pharmacy. They do ship, and it isn't even that expensive, about 50 bucks a bottle.
Posts: 1251 | From california | Registered: Apr 2005
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What is the "low dose" of heparin you take? Thanks
Posts: 925 | From California | Registered: Sep 2004
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ByronSBell 2007
Unregistered
posted
JellyBelly, golf sounds like fun. My cousin got a full ride to Auburn to playon the golf team and he will more likely be pro some day. For me, whenever I swing a golf club, the club goes fu rther than the ball does.
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Jellybelly
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Member # 7142
posted
I take 8,000 units a day. Each spray in my nose is 1,000 units.
Posts: 1251 | From california | Registered: Apr 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Interesting how the tests numbers are different in people. My daughter had a very high Fragment 1+2, she acutally turned blue around her lips. Mine was normal. My dad's Fibrinogen was sky high, and closer to normal in othere tests where I was sky high.
Posts: 1251 | From california | Registered: Apr 2005
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