went to llmd today and she pulled me off all meds. It seems that plaquenil is causing problems with liver function (liver panel 2 months ago was normal) now the numbers are slightly elevated...don't remember them specifically. Also platelet count was a tad low. She pulled me off all meds (plaqeunil/ flagyl(pulse every third week)/ doxy/ biaxin.
I'll be off for two weeks then retest liver function/ platelet count and decide where to go from there. I've been doing this tx for 3 monthes now and have made significant strides in my recovery.
What can I expect as a result of being pulled off all meds for 2-3 weeks? Currently, I do 3 weeks on meds followed by one week off. I'm worried about losing ground after the progress I have made.
Posted by karenl (Member # 17753) on :
Just got my labs and I have the same problem. Platelets are low, liver function borderline. I was just doing a bit better on mincyclin and do not want to stop treatment.
Does she think the low platelets are from plaquenil?
Posted by lisamlj (Member # 24666) on :
Karen- yes, she does think that the low platelets are from plaquenil. I don't want to stop treatment either. I am trying to look at this as a minor bump in the rode and not a major set back. Good Luck, Karen. Keep me posted on when you resume tx.
Posted by karenl (Member # 17753) on :
there are some herbs recommended, will post if you are interested.
Posted by lisamlj (Member # 24666) on :
Right now I take milk thistle (silymarin)-600 mg, selenium-175 mcg, vit c (as ascorbic acid)-300mg and green tea. Are there others that have helped you?
Posted by lightfoot (Member # 2536) on :
Plaquenil may be the culprit for me too. I was very surprised because I have been taking it with success for about 6 years along with Zith. I'm having the same effect.....low platelets, low WBC and elevated liver enzymes....I would be very interested in input on natural remedies.
Posted by karenl (Member # 17753) on :
Millefolium C 30 helps with bleeding Papaya juice wheat grass juice aloe vera gel. Hope I do not get a herx from these.Just got them.
These should help to restore platelets. I also found that platelets need protein and I am low in protein.
Posted by mam (Member # 22695) on :
Medications are not the only things that can impact platelets. You should know that green tea can lower platelet level as can omega oil. These are only a few supplements that can add to the platelet problem. See link for more complete information:
Thanks, this is important. Unfortunately I have also my beta2glycoprotein elevated what looks more like I have a bone marrow problem or a very extreme inflammation. Lightfoot, did you have this tested as well?
Posted by FunkOdyssey (Member # 15855) on :
Elevated beta 2 glycoprotein is associated with antiphospholipid syndrome which is an autoimmune clotting disorder and often a subset of Lupus. Might be a consequence of Lyme. Nothing to do with your bone marrow though.
Posted by karenl (Member # 17753) on :
FunkOdyssey,
do you know more about this? According to google it is a marker for bone cancer and for lymphoma. I have bone and lymph problems. But I just started abx treatment and feel better, so I think it might be a die off thing, like too many cells dead and the glycoprotein now opens in the bloodstream. I just hope it is lyme-lupus related.I want my doctor since years to check the antiphospholipid antibodies, but he thinks I do not have it.
The papaya juice is powerful!!
Posted by lisamlj (Member # 24666) on :
mam-
thank you for the link
Posted by FunkOdyssey (Member # 15855) on :
quote:Originally posted by karenl: FunkOdyssey,
do you know more about this? According to google it is a marker for bone cancer and for lymphoma. I have bone and lymph problems. But I just started abx treatment and feel better, so I think it might be a die off thing, like too many cells dead and the glycoprotein now opens in the bloodstream. I just hope it is lyme-lupus related.I want my doctor since years to check the antiphospholipid antibodies, but he thinks I do not have it.
You could look into the Cowden protocol as well, to use temporarily.
Many people have stated that Cowden will stop most people from getting worse, so it sounds like a good time to give yourself a "band-aid" at the very least with some herb treatments.
Some suggestions would be Cumanda, Enula and Samento. There are others. Please research the Cowden Protocol.
Posted by karenl (Member # 17753) on :
Funk,
thank you for this great link.I did more research and found a lupus doctor who treats with antibiotics. Will ask for his advice tomorrow.Also PAD (peripheral artery disease and deep vein thrombosis)is linked to this marker. In the end it is bad infection and debris blocking our system.