posted
Char, Your mailbox is full and I wanted to check in with you and ask you a bunch of questions.
I was given the diagnosis of hereditary angioedema and it has not been ruled out by repeating tests and going over symptoms with a top doctor in the nation.
He found a chronic sinus infection and is treating that. After a month on biaxin at a low dose with no improvement, I was switched to levaquin twice a day.
Suddenly I look healthier and the edema has gone down significantly. Over two inches! Still not normal sized,but at least we can see bone now.
I finish the levaquin this weekend and start doxy, but I think its only 100 once a day.
We fear this won't be enough to get me better and I will relapse. Can you send me the info. on the doctor you all are going to now? I think we need to get an infectious disease doctors opinion that understands lyme, co-infections and other funky infections.
For some reason, the only time I improve is on strong doses of certain antibiotics. The current doctor says that a severe infection could case a massive inflamatory response, hence the edema.
It would help to know for sure what the infection is, so it can truly be treated properly.
POTS/pre-syncope is ALOT worse suddenly. At least the sugar cravings went away on the new antibiotic. Lyme tests are negative, esophils are normal, so doctors don't think lyme. Even a top lyme clinic in the nation, said something other than lyme was going on.
I am stilling dealing with issues from the blood clot I got from the PICC line. SO not fun to say the least. Does anybody know of something you can take other than coumadin or aspirin? I swell up worse on aspirin and don't want to take it, and my edema specialist agrees it's a bad idea. When it was tried on me, it slammed me hard, and I was left feeling like hell in bed for at least a week.
Vascular doctor keeps pushing for me to take aspirin and doesn't get how severe the edema is, etc. He says I can just deal witht he extra edema! Considering I can gain 20lbs of water weight in barely two days with a bad swell, I refuse to do it.
For others that read this, if you have any thoughts or ideas, please send them my way.
Thanks! Blackbirdsings
Posts: 114 | From USA | Registered: Sep 2005
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Bird, I am so sorry you are going thru all of this.
My college roommate had angio endema but it was only terrible if she exercised and would work up a sweat. She has been ok for years but lives in air conditioning or her pool.
If everyone is 100% sure it isn't Lyme, are they sure it isn't another strain or a co-infection? or have they mentioned neuro toxins, like mold, heavy metals, environmental toxins, etc?
ps or exposure to off shore game fish, or visits oversseas where you may have been exposed to a toxin, or to places where there may have been red tide residue or blue green algae..or there is some lake area in Florida that has neuro toxins according to the mold ghru. Just some other ideas..
Good luck. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
Was recently reading that hypercoagulation can cause edema. Have you had your fibrinogen levels tested? Hemex is the best lab for the ISAC panel -- immune systme activation of clotting.
Another possibility to thin the blood is enzymes -- could try bromelain or Wobenzyme -- must take either on an empty stomach -- best 30 minutes before a meal or 2 hours after a meal. Start with small doses as this could make your antibiotics work better and could also release toxins as the fibrin levels are dissolved and the bacteria/viruses are exposed.
You do know that Levaquin is used to treat Bartonella don't you.
What were the other antibiotics that helped? Maybe someone here could see a pattern.
Hope you can find an answer soon. Glad you are seeing some improvement at least with some symptoms.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Thanks for the replys. We tried to get me to a LLMD but the office says they aren't taking any new patients :-( We'll have to see if my doctor can get me in OR we will have to try find somebody else that is good.
I had been told I clinically have bartonella and babesia BUT after the blood clot nobody wanted to deal with it (doctors) and they were saying it must be something else. Although, these weren't LLMDs saying this...
Levaquin, Cipro and Avelox help me ALOT. Sometimes I do well on the medicine they use for Z-pack and doxycycline.
Sinus infection came back full force and they put me back on Levaquin ONLY it's once a day. I was doing really well when it was twice a day. With it once a day I get some improvement but it wears off and than I get worse again until the next dose.
When it was twice a day, the edema went down several inches.
Also, now my knees are very puffy and tender when the muscle attachment is pressed on...the part on the quad if that makes sense. This is in addition to the constant pain in my knees. When I go from sitting to standing or reverse it is now VERY painful and it feels like they are going to give out. Not good.
This had happened before when they get really swollen or go back down. Seems to cause stuff in my knees to get irritated. It had gone away briefly after seven days of levaquin twice a day, but is back full force now. I am going to need a dr to get me on a better antibiotic schedule so this doesn't continue. I worry about damage at this point.
The only time I've gotten better was on a month of levaquin followd by ten days of doxycycline. When the meds were stopped, everything came back full force. Very frustrating to go back to being a normal healthy person, and have it come back full force. This was several years ago.
So, we are trying to get me to a doctor that can figure out if this is bartonella or babesia or both, OR is it some other kind of parasite/infection. I do have the striations that go with bartonella on my legs and those only popped up when I got worse and had a funny rash like round spot on my leg following a bite of some sorts a few years ago.
All ideas are welcome! Thanks! Blackbirdsings
Posts: 114 | From USA | Registered: Sep 2005
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posted
Lymeout, I sent blackbird the link to dr c's site. Please remove his name from your post. Thanks!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
quote:Originally posted by blackbirdsings: Levaquin, Cipro and Avelox help me ALOT. Sometimes I do well on the medicine they use for Z-pack and doxycycline.
I do have the striations that go with bartonella on my legs and those only popped up when I got worse and had a funny rash like round spot on my leg following a bite of some sorts a few years ago.
I'm so sorry you are going through this.
I strongly second what Bea said. Look at the medications that help you. They all work on Bartonella.
You have the striations. Perhaps you can print out the photos of Bartonella streaks from this or other websites and show it to your doctors.
Bartonella can cause all kinds of heart and other symptoms.
I'm on Rifampin now for Bartonella (I had to stop Levaquin because of tendon problems). My case of Bartonella is turning out to be worse than my case of Lyme. Yet my Bartonella test did not turn positive until the third test - after I had started Levaquin.
Maybe you need to get retested. Although there are several strains of Bartonella and the tests only look for a couple.
Bartonella requires several months of treatment.It's a tough one to eradicate. If Bartonella is at the root of your symptoms, you have not been on treatment long enough.
It is very encouraging that you feel better on Bartonella medications. Bart can cause nasty herxes, so just don't be scared if that happens.
Please let us know what happens.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
I'm doing very poorly, but wanted to let folks know what is going on real fast.
Char has helped my family get the name of a dr that might be able to help me. A non MD in the office can see me to at least get me in the door. So we are going to try to get them to book an appointment for me tomorrow and go from there.
We talked with my primary today and when we explained my response, he went woah...that sounds like a co-infection for sure! So that is good to have him backing me and that he is willing to strongly consider that it's a co-infection and go from there.
We really need somebody to diagnose that is experienced with this stuff, treat, and go from there. There are things that help me without a doubt, and like you all said it all points to bartonella.
I appreciatte you all speaking up and point that out to me. I had started to wonder, but it helps to hear others come to the same conclusion.
One other question...Would it point to babesia if...low red and white counts, reds clumping, low platelets and a few other things that become low when those are low. The levels will get freakishly low for awhile and than go back to "normal."
By normal, they are just barely so...like .1 from being low. Been checked for ALOT of really scary disease, but everything was negative. We wonder about babesia or something that is maleria -like. All ideas are welcome!
I really appreciatte all of the kind support and ideas from everybody on here!! Thanks again!
Blackbirdsings
Posts: 114 | From USA | Registered: Sep 2005
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bettyg
Unregistered
posted
BBS, so sorry to read of all the latest problems you are experiencing.
another blood thinner, LOVENOX, is a self-injected shot into our LOVE HANDLES that the hospital had me do there plus 10 days at home! EXPENSIVE! It's very painful after giving it to yourself; stings awfully. my stomach looked like someone used it as a punching bag with all the black and blue mar ks on it for 15 days worth!
edema .... boy do i feel for you now after my last 3 weeks of extreme edema in my knee, leg, ankle, and feet! hurts to just touch the area. so for this last year you've been going thru; i really feel for you K!
best wishes on getting into someone SOON WITH LLMD experience to help you!
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