I started heparin about 10 days ago and have been having the usual herx - bad pain, brain confusion, fog etc..
However, for the past 2-3 days, at night when I try to sleep, I am kept awake by racing heart - about 90 bpm. Doesn't seem all that fast, but when I am experiencing it, it keeps me awake and it feels serious. It is accompanied by slight chest tightness ad some aching in the chest.
Last night it was also accompanied by a bad headache.
Has anybody else gone through major heart herxing on heparin?
It seems reasonable that of course we would, especially since I had heart involvement in my early days that are probably unresolved. However, I have not had heart symptoms in about 10 years. But there are probably biofilms that are being busted open in there.
I am afraid that I could be having a reaction to the heparin itself, since it is known to cause allergic reactions, among the symptoms being heart troubles.
Any experience is welcomed.
For now, I am going to stop the heparin and do the enzymes for my hypercoagulation. When I see my doctor next I will ask him for an HIT test (heparin induced thromocytopenia) / heparin antibodies - which can cause these symptoms.
Thanks luvs
[ 11. April 2008, 07:16 PM: Message edited by: luvdogs ]
Posts: 588 | From Rhode Island | Registered: Jun 2006
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I will give it a couple of days and then re-evaulate. Maybe I will go back on a very very low dose and stay there for a while. At this moment my rate is 95, sitting at my desk.
Good to know that your LLMD increases it - I have heard that the herxing can be horrible, and I do not see why the heart would be spared. I guess it becomes a question of what types of herxing we can actually survive.
[ 08. April 2008, 07:18 PM: Message edited by: luvdogs ]
Posts: 588 | From Rhode Island | Registered: Jun 2006
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-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Thanks Allie - yes, I slept last night and stopped the heparin and other meds for a night.
As for the other replies, I know, that is what I am concerned about. I am going to sit on this and do some more research - there are so many different reactions that could be bad, but then it could be a herx.
There is HIT, allergy, and toxitiy, and then herx. I need some bloodwork to see where I stand.
Thanks everybody!
Posts: 588 | From Rhode Island | Registered: Jun 2006
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posted
Sounds like some of these were my symptoms... I have to see if I got a contaminated batch... Mine was the heart fast and pounding and fainting feeling -
These are the sx from the contaminated batches that have been recalled:
Adverse patient reactions have included: stomach pain or discomfort, nausea, vomiting, diarrhea, decreased or low blood pressure, chest pain, fast heart rate, dizziness, fainting, unresponsiveness, shortness of breath, feeling your heart beat strong or fast, drug ineffectiveness, burning sensation, redness or paleness of skin, abnormal sensation of the skin, mouth or lips, flushing, increased sweating, decreased skin sensitivity, headache, feeling unwell, restlessness, watery eyes, throat swelling, thirst and difficulty opening the mouth. Some of these reactions may be severe or life threatening.
[ 11. April 2008, 07:26 PM: Message edited by: luvdogs ]
Posts: 588 | From Rhode Island | Registered: Jun 2006
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I just contacted APP to inform them of my situation, explaining that I had Lyme and it could have been the lyme causing the problems (mine was made by Abraxis - a subsidiary of APP). I spoke with them for about 45 minutes.
I did NOT have the Baxter heparin which is what has been recalled.
After reviewing everything, we both concluded that there is a good chance that I am allergic to the sulfites in the solution, as opposed to an outright heparin reaction - like being poisoned by China lol Lymetutu
She also said that there are many preservatives in the regular heparin - contaminated by China or not. However, this is the case with many meds.
This is something that I react to in everything. (I have Multiple Chemical Sensitivies) This is a similar reaction that I get when I have foods/drink with sulfites or many preservatives.
She said that, in the future, I can order the absolutely preservative-free heparin. This might be important knowledge for other MCC Lymies going on heparin.
The only drawback is that it is very low potency, meaning that we have to inject a lot subcutaneously. This could cause a lot of bruising and discomfort, if it even fits "under our skin" hehe
She said to order the 'preservative-free, 1,000 units per 2 ml". This is made by APP pharmaceuticals. (again, NOT Baxter).
Hope this helps some people out there.
I think that the heparin is an important part of our therapy, esp. if we have coagulation issues - but even if not (to get rid of the biofilms) - so I do not want this post to scare anybody.
But heck, for all we know - people could have just been dying bc of a bad herx.. and they just needed to back off on their meds, like any other really bad herx.
And for all I know it was a heart herx to boot. I don't see why it wouldn't be. It didn't start until ten days into therapy, which would be good timing for a herx. (I had already been having the rest of the body herxing immediately preceding that.)
[ 11. April 2008, 07:24 PM: Message edited by: luvdogs ]
Posts: 588 | From Rhode Island | Registered: Jun 2006
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posted
I am sooo thankful I came across this thread.
I am currently infusing Doxy 300mg daily.
I started to feel a lot of heart problems along with slow respiration, feeling faint, confused, headache and really though that these were tied to the lyme.
But upon recording my symptoms, something was just not right. I have had major heart involvement before, but this time around, not so much....before the contamination though.
Then yesterday my infusion company comes to the house with compounded heparin and took away all my other "old" prefilled injectors.
Just made me go hmmmm. I will not use anything but compounded now as I am convinced that I was using from the bad batch. Company must have thought so too.
Thanks for bringing this up.
I believe I am alive all these years because of the invaluable information on this board and of course my LLMD and God.
-------------------- ...~*Just keep swimming, Just keep swimming*~... Posts: 120 | From New Jersey | Registered: May 2006
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posted
Breezy - these were exactly my symptoms. To the point that I warned people that if I fainted, "this was going on and I have been taking these meds.." etc.
I was scared because it felt very different from my Lyme heart problems and the headache was different and so was the faintness. My heart, although not terribly fast, felt like it was pounding out of my chest, and I had real tightness in the chest also. Nothing calmed it either.
I hope they get this heparin thing straightened out soon! I am going to do compounded... Can they make the liquid /injectible compounded also?
(I pmed you also)
Posts: 588 | From Rhode Island | Registered: Jun 2006
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posted
Lovenox (sp?), low molecular weight heparin, to my understanding is more easily tolerated, and lacks many preservatives.
Posts: 690 | From East coast, USA | Registered: Jun 2006
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