posted
Hey all, first time posting in a long time. Have been treating for quite a bit now. First with a bad "llmd" now with a good one (recommended by someone on this board).
I am on a bunch of ABX as well as supportive supplements. (vitamins, probiotics, enzymes, antioxidants, fish oil, other supportive stuff). My doc believes in hitting everything at once so I am on lyme stuff (cefdenir, zithromax, and flagyl [2 week pulse]), plus Mepron and added Artemisinin pulse. So this week i switched to Bactrim as well (replacing cipro and doxy) as started my flagyl pulse. Presumably hitting babesia hard.
I was ok for about 3-4 days (Wednesday) and then went to the gym and did the Sauna. The herx came on HARD. Babesia symptoms, Lyme symptoms, and maybe even some insanity. Anyway somehow i survived that and this Saturday I had a pretty productive day, on my feet getting stuff done all day. At night lying in my bed I had what felt like a charlie horse in my left thigh, pulsing sort of deep pain, that went away when standing up and clenching my leg muscles.
Naturally, herxing and being super anxious, I instantly think blood clot. It just felt as if something was going on in a blood vessel. It woke me up once in the night and then I start researching all about clots instantly scaring the heck out of me. So I email my good LLMD and I tell her: my leg isn't swollen, it's not hot to touch, walking doesnt make it worse, but the pain scared me. She responds and suggests the leg pain is the Bactrim hitting bart cause of the switch up.
Well I go to work yesterday and naturally I continue reading any post about Blood Clots on lymenet and mdjunction as well as any general information on them, deep veinn thrombosis (DVT) and pulmonary embolism (PE). I had a rough day. Air hunger, more weird pains in my leg (although not swollen and they are very fleeting) so I email her back and ask that i get my blood tested and add in a test for D-Dimer which assess clotting activity.
Fast forward to today, I had a rough day herx-wise with some leg pain, still in the left only, still not consistent. I felt off balance, and had some rough air hunger. I have had both of these symptoms before with Babs although air hunger at least is a go-to sign to look into a blood clot. I got the blood work done, and am awaiting the D-Dimer results now.
I have been checking around my leg to try to identify any clot areas. I've had little pains here and there and almost felt like they've moved (which is a bad thing with clots). I think that I may have found some spots, but the ability to isolate them and their location makes me want to believe they are superficial clots if anything (as opposed to deep vein thrombosis which is very serious - go to the hospital now type stuff). I am trying to decide if I should wait or if this is a serious situation that I need to go to the ER like now.
It seems like I am thinking the worse. It is just hard to sort out babs symptoms (air hunger, dizziness) from what could be a clot in my lung or something. I really don't want to have to explain my treatment in an ER to a doc and furthermore don't know if my liver right now could handle whatever sh*t they would want to start me on.
Also what confuses me is that i have historically low platelets (which in high numbers cause clots) and I take bolouke lumbrokinase daily which is supposed to dissolve clots. I've also taken a baby aspirin the last day. So what the heck should I do?
Sorry for the novel. I don't really have anyone to vent this stuff on, as I've mostly silently soldiered on through treatment in my own head.
Posts: 5 | From Southern CA | Registered: Jan 2015
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posted
I'm off to bed but my first thought was lack of magnesium .. most drugs (and you're on a ton of them) deplete magnesium.
That will definitely cause leg cramps.
Blood clots are much more rare... and with your usually low platelets... well...
Here's hoping...
But .. it's your call.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- you say: " . . . I've also taken a baby aspirin the last day. . . ." (end quote)
Please, do not take a baby aspirin, or any aspirin at all as routine. It may be good to have on hand in case of a cardiac event, though I'd want to study up on that (and magnesium may be better).
Aspirin (a daily dose) is not necessarily as preventive as it's been touted and has a great deal of risk when routine. Detail:
Topic: will one baby aspirin a day make gastritis worse? - 23 January, 2015 -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- you say: " . . . a charlie horse in my left thigh, pulsing sort of deep pain, that went away when standing up and clenching my leg muscles. . . ." (end quote).
Following up on LymeToo's first thought, magnesium deficiency also comes right to my mind. Lyme, alone, severely depletes magnesium. Many Rx do, too.
It's the #1 top consideration and I'd bet on it (along with perhaps other minerals / electrolytes being off kilter . . . be sure you are getting excellent nutrients & water spread out from first thing in the morning to even an hour before bedtime, too).
posted
Yeah, I actually was reading that one last night.
I think I am willing to take this risk (i've only taken baby aspirin 2 days so far) to thin out my blood before I hear back about the D-Dimer test.
I've been on aspirin for a couple of weeks, a few years ago. I actually had a clot in my retina! Eye doctors did a full blood work up and I didn't have any underlying genetic factors for clotting.
My thoughts are now that this was most likely due to undiagnosed Babesia. This is the first time in my almost 3 years of treatment that I have aggressively attacked Babesia and I'm surprised how bad I feel compared to just not treating it in the past.
Posts: 5 | From Southern CA | Registered: Jan 2015
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Keebler
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posted
- There are far safer ways to "thin out" blood if that is the goal. But that may not be the goal.
You say that you take "bolouke lumbrokinase daily which is supposed to dissolve clots." (end quote)
Please do not assume that just because you got off lucky with aspirin before you can again. With the kinds of Rx for treating lyme, etc. the lining of your stomach is NOT the same.
Lyme, alone, compromises the stomach lining severely. Adding aspirin to that scene can be trouble. -
[ 01-28-2015, 02:35 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- You say: " . . . I was ok for about 3-4 days (Wednesday) and then went to the gym and did the Sauna. The herx came on HARD. . . ." (end quote)
I'm assuming while at the gym you only did the sauna? If not, just be aware that only non-aerobic exercise is advised until a good remission is achieved or your LLMD clears you for aerobic.
Back to even just to how the SAUNA can clobber.
Electrolyte & mineral depletion first came to mind with the muscle cramp but now is looking more likely, in light of the sauna use.
I assume this was a regular high heat sauna (or you would have likely said not. A low heat infrared sauna is safest).
Getting too hot can have drastic effects for many with lyme. Be very careful about heat. Even getting just a little bit too hot can really boomerang big time . . . and the effects can land someone in bed for days.
I made that mistake a few times before it really hit me that heat was just not going to work for me. Warmth works much better for myself and for many. It need not be uncomfortable, should not be uncomfortable at any time. But it may not hit until later that day or in the next day or two. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Yeah, I think that everything may have just gone too fast. I have been slowly working up in the Sauna (high heat) with pretty good success thus far.
I think the switch in meds and being on a flagyl pulse just made a drastic change in my homeostasis.
Mineral and electrolyte depletion is most likely the culprit as I tried to down lemon water after that massive herx. Probably peed a bunch of my electrolytes/minerals out.
I have been starting detox baths as well, and I think the entirety of trying to detox at such a fast pace is just not feasible.
I really hope this is the case, at this point I've decided to wait to hear back on my bloodwork
Posts: 5 | From Southern CA | Registered: Jan 2015
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Keebler
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posted
- Be sure to keep the detox baths a cozy warm, not hot. You will still sweat enough & help circulation with a nice cozy warm.
IMO, detox should not be so much as an event or series of events as ongoing steady and measured liver / kidney support. We are in this for the long haul so take care.
Have a good night. Hope you have some magnesium on hand. It will help with sleep. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I follow the exercise protocols. Although this is my first post, I've lurked these forums for quite some time and have done some research I appreciate your help!
Posts: 5 | From Southern CA | Registered: Jan 2015
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Keebler
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posted
- Good to know you've got the basics.
When I see someone new, it's sort of instinct to help a newcomer prevent some of the mistakes that we made. I'm surprised I survived some of the pushing I did with exercise until I'd drop, hot tubs, etc.
At that time, though, I had no idea. Wound up bed bound for a long time after one particularly long hot bath. It felt great until it really didn't. I did not seem to have an early warning alert and before I knew it, I was just done in.
Glad you won't be experiencing that. Best of luck to you as you proceed on this courageous journey. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
You say you are on lumbrokinase. What dose and how frequent?
Hubby noticed a big difference in taking 2 pills twice daily versus 2 pills 3 times daily or 3 pills twice daily.
With electrolyte deficiency cramps are not always due to magnesium - it could actually be a calcium or potassium problem. It is trial and error to see what helps you.
I always added the No Salt brand (potassium substitute) to hubby's Epsom salts baths. 1 teaspoon up to a couple of tablespoons - you only absorb what you need if doing it in a bath.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
When I first got lyme one of the painful symptoms was in my right leg, the calf muscle. Anyway, again before diagnosis, I got swelling on the top of my right foot, and more leg pain. I went to the ER and had no clot.
I don't even think about it anymore, and I found out once diagnosed with lyme that I also have a genetic blood clotting disorder. Ignore Ignore Ignore... =) I just blame everything on lyme now.
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Well, it's not really ideal to ignore everything yet worrying will do no good either.
It is best to know what all the variables are and cover all the bases. If there is a genetic predisposition to something, it's important to be mindful of that.
Lyme certainly affects everything about our bodies but everything cannot be blamed on lyme.
It's just that some things do have double & triple duty (magnesium will cover many bases) and
some of the things that pharmaceutical companies have touted for years as being good for us (i.e. aspirin) can have serious risks (in light of what the stomach lining does for those with lyme) and just may not worth that risk it when there are safer options.
But to also assume the blood requires thinning may not exactly be the case. There are so many factors.
Lumbrokinase also may be quite adequate.
Turmeric is something else to consider, ask your health professional about. Antioxidants can help the blood vessels relax and that can help circulation in various ways. Plus, it has nutritive benefits.
There are a couple excellent books written for those with lyme that explore nutrient benefits, too. Dr. S, Dr. H each have good books & Buhner's books, too.
The Lyme Diet, as well, for foods to help heal and provide optimal advantage. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Blackw00d, Have you ever had a blood clot? If not I would not worry about it. You're already taking fish oils which is thinning your blood.
Posts: 107 | From new jersey | Registered: Dec 2009
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