canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi guys,
Well, I should have checked the Internet when I got the DVT from my PICC line; apparently there are safe procedures to remove them while they are still relatively new (did I mention how much I hate Canadian health insurance lately? These docs don't even mention these options bc they are pressured to save $ for our universal health insurance)
Now what -- is there any way to safely remove this thing once it's been treated with 4 months of blood thinners??
Best,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
In a port, they remove the clot with cathflo. I thought they did the same with a picc.
They inject the cathflo in the catheter and wait 30 minutes to 4 hours and then draw it back out. It dissolves the clot.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
| IP: Logged |
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Thanks, Faithful
I developed the clot around the outside of the PICC in Feb -- they had to pull the PICC and put me on blood thinners -- which is the point; I would (have) like(d) to explore the option of having it removed...
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
What about systemic enzymes (nattokinase, etc.)?
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
You bring up a very good point, Razzle. I will ask my LLMD when I speak with him in July -- also, to keep in mind...according to the research, my clot is now firmly attached to the inside of my vein, with a "skin" on it, preventing it from budging -- I don't want to do anything that might encourage it to break off
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
I think that treating an existing clot with LED light therapy and/or with PEMF, pulsed electromagnetic field therapy, would help it to heal quickly.
posted
Ports are a lot less trouble than picc lines, wish you had done one of those. I hope you can figure things out.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
| IP: Logged |
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Carol: Did you have a follow-up ultrasound to determine whether your clot had indeed / to what extent it had dissolved? Using the Thermotex? Using the LightWorks?
Faithful: I keep thinking I have an underlying clotting issue; otherwise, why would I have developed clots around the PICC line so quickly? How safe would I be getting a port, if I have to do IV abx in the future; am I just asking for more problems / going to have to take blood thinners if I do IV abx in future?
Best,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by canbravelyme:
Carol: Did you have a follow-up ultrasound to determine whether your clot had indeed / to what extent it had dissolved? Using the Thermotex? Using the LightWorks?
No, I didn't have a follow-up ultrasound. When I first developed symptoms, I consulted with a friend who was also a retired nurse, and she advised me that I should see my doctor for an ultrasound and blood thinners.
Researching online, I read that a small percentage of people with deep vein thrombosis in the legs may have part of the clot detach and travel to the lungs or the brain.
Despite this, I did not go to my doctor's. In my defense, I was not feeling so hot, what with headaches, body aches, and severe fatigue...my usual symptoms.
I looked to see what had been published regarding treatment of clots with systemic enzymes. I was already taking a moderate daily dose of Wobenzym, and I ramped up to 30 tablets.
I knew that the Thermotex infrared heating pad would increase the circulation to the area, and I had nursed numerous hospital patients for whom we used a regular waterproof heating pad with warm soaks.
After about two days of treating myself with Wobenzym and the Thermotex, the painful inflamed spot on my lower leg showed definite improvements.
The increased dose of Wobenzyme also reduced the headaches and body pain. I continued for about a week, until everything seemed back to normal.
It was after this experience that I bought the LightWorks, after reading about the first group of people from LymeNet who went to Germany for photon treatments. The LightWorks is not as strong as the professional (and more expensive) LED light therapy units, but is still terrific.
A big advantage of using the LightWorks instead of the Thermotex is that it does not get as warm/hot. I don't know what wavelength the Thermotex uses, but it feels ~very~ warm on the skin, although you don't have to worry about getting burned, like with a regular heating pad.
Have you been reading any of the online info about using systemic enzymes to treat clotting? Even if you don't want to use systemic enzymes, you can still treat yourself with LED light therapy or PEMF, pulsed electromagnetic field therapy.
Both of these would help the body to "clean up" the clot.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
I am not sure if this is related......but when I was first starting Lyme treatment I was tested for the Factor V Leiden.
You can get one "copy" from each parent, if they carry it. I have two copies....
See is this sheds any light on your issue. It is a simple blood test.
posted
Personally, I would be extremely cautious self-treating what I thought to be a DVT without a medical consult.
DVT's can fill the whole vein, from ankle to pelvis and then detatch and snake/travel to your heart and well, kill you.
If you have symptoms of a DVT, shortness of breath, pain in one or both of your calves or pain in your chest or any other unusual symptom outside your normal baseline, always call a medical professional, go to he ER, call 911.
(I was told Shortness of breath is NOT normal, even WITH Babesiosis: per Dr. J.'s LLMD triage line in Wash DC.)
Use your best judgement, or your friends, or your partners, a medical professionals best judgement, especially if you are questioning your own.
The ER or doctors office can run a simple blood test and rule out a blood clot pretty quickly.
Western medicine can be good at some things, taking blood and looking inside the body using imagery are two of those things. Be your own best advocate when in these situations. Insist on the D-dimer testing.
You can also ask your primary or LLMD for a D-dimer test at any time if you are concerned about a blood clot. They may ask why, but probably wouldn't have an issue running one for you either.
An ER can also start you on Heparin, which stops any more blood clots from forming and allows your body to start working at stabilizing the current blood clots. That's what the fibrin 'netting' is for, stabilizing the clot from moving any further. Yeah, it isn't best case scenario, your vein now has this scar, but you're also not dead!
Canbravelyme: I saw a youtube video explaining a procedure like this in your link. And I really got the impression that this is rather new procedure and it is only reserved for those blood clots that do fill up the length of a leg and are at risk of snaking up through the heart or have already done so?
It doesn't sound like it's a procedure for smaller clots that would be used when Heparin would be more appropriate to utilize or even in place of a short term filter. Please don't quote me on that. I didn't research the procedure very hard because it didn't really apply to my lung clots and it isn't believed that mine developed because of a DVT.
I am sure the procedure is pretty darn expensive and probably still something that many insurance companies would say no to and use the excuse that it's still in the experimental phase.
I am in no way an expert or a medical expert or even a medical professional. This is just what I know from what I've looked at after my own PE experience of about 5 weeks ago. I blame it on sludge from Babs. But that's just my opinion.
Hugs!
Edessa
Posts: 138 | From Eden Prairie, MN | Registered: Dec 2011
| IP: Logged |
quote:Originally posted by canbravelyme: Faithful: I keep thinking I have an underlying clotting issue; otherwise, why would I have developed clots around the PICC line so quickly? How safe would I be getting a port, if I have to do IV abx in the future; am I just asking for more problems / going to have to take blood thinners if I do IV abx in future?
Best,
I also clot, but use lumbrokinase daily to keep that in check along with fish oil. Also, I make sure I drink plenty of water. Most proteolytic enzymes will take care of the clotting problems and if you still have issues, your doctor can help you with a prescription to thin your blood.
Lyme patients typically have thicker blood.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote: Originally posted by Edessajarrue: Personally, I would be extremely cautious self-treating what I thought to be a DVT without a medical consult.
I agree. I am naturally cautious and I had experience nursing patients who had deep vein thrombosis.
The problem had not progressed very far before I realized what was wrong. I was planning to see my doctor if the lump and the pain got any worse.
I think if I had taken 30 tablets of Wobenzym without ramping up, I would have had digestive problems. I was already taking 12 tablets daily, so my system was used to it.
Within a day's time I could tell the painful spot was not getting worse, and in less than two days it had definitely improved.
Even if you decide to continue with the prescription blood thinner and not add enzymes, you can still use far infrared light therapy to increase blood circulation and help the body heal itself.
Using the SOTA LightWorks on the areas with clots is sooo much easier than trying to do hot compresses over such a large area. You can recline in bed or on the couch and read or doze.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi All,
Thanks so much for your considered replies
1. The clotting tests are ordered, including Factor V Leiden.
2. I'm off the blood thinners now � they're only prescribed for 3.5-ish months if the clot is considered to be of known cause (the PICC line is considered the cause)
3. The clot currently is, allegedly, well attached to the wall of the vein and � allegedly � isn't going anywhere; it "should" be OK if I resume weightlifting. Should. Sigh.
4. Re: the procedure to remove the clot; I asked why this hadn't been done � if I remember correctly, it's only considered for arteries, not veins, because arterial clots are considerably more dangerous.
I have an appt with my LLMD next week � I'll let you know what his suggestions are on where I should go from here.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Razz]](tongue.gif)
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic