need help

[dar7]

looking for answers my fiancee has lyme which we believe is caused lupus anti coagulant in blood he has had a stroke and heart attack is on blood thinner 2 hemotologists said stay on plavix llmd dr wants to take him off so he can treat for lyme with anti biotics so conserned he may another clotting issue anyone know about lyme and hughes syndrome

[MaryF Administrator]

Hi Lyme disease is known as the great mimic, it can mimic many symptoms of diseases, however your haematologists are right to be concerned about stopping the anticoagulation, it is crucial that the other doctor with his or her specialty listens to them. Who diagnosed the Hughes Syndrome/APS? Let us know where you are located.

I also found these papers for you: ncbi.nlm.nih.gov/pubmed/217...

lyme.org/journal/journal/vo...

MaryF

[dar7 in reply to MaryF]

thank you so much for your responce Mike was diagnosed with lupus anti coagulant [or antiphosolipid syndrome] in his blood at dartmouth hicthcock in hanover N H what do you think if maybe the llmd puts him on antibiotics that aren't as effective for lyme [he said he does have 2 he can use while on thinner but will only kill some of the lyme] then maybe his blood will start to get better then retest blood and maybe come off thinner then go on stronger med thanks for your input this has been an extreamly difficult struggle Mike had his stroke oct 2012 then heart attack jan 2014 dar7

[GinaD]

I'm certainly not a doctor, but I do not understand why the patient should come off plavix to take,( presumably) antibiodics?

I suggest putting the foot down and insisting that the doctors get on the same page so to speak by talking to each other--instead of ( again, I presume) --through you.

[dar7 in reply to GinaD]

thank you for that the llmd does seem to always make me do all the leg work so I will request he speek to blood drs

[GinaD]

Does the non-APS doc suspect that the Lyme infection is driving the APS? Because, again. . . There is an arrays of blood thinners and an array of antibiotics. The English major housewife from West Virginia suspects there is a way to treat both --if the doctors will talk to each other!

Good luck! And do let us know how this sorts out.

[dar7]

thanks to all for that support we are going to the llmd tues so we will see if he can treat the lyme somehow while on thinner thanks for backing up my thoughts of staying on thinner I'll keep you posted

[Hidden]

Yes....I had Lyme...was treated and continued to feel terrible.....could not get out of bed.....bone weary...

long story.....I made an appointment with an MD who is in the forefront of Lyme research....Dr. Andrea

Gaito MD/Rheumatologis/ ....when she found out I no longer tested + for Lyme she took it upon herself

to test me for APS....I had never heard of "stick blood" nor had any of the many MD's I consulted before I found her considered testing me for Autoimmune DIsorders.

Dr. Gaito is on the Board of DIrectors of ILADS/ International Lyme and Associated Diseases Society..

ILADS.org.....I recommend going to their website....there are links to MDs

[dar7 in reply to Hidden]

thanks so much I have gone through ILADS they are very helpful but the llmd we are seeing is the one the referred I will look into Dr. Gatio did you come up positive for APS and how are you doing know

[Hidden]

Hello....I did come up positive for APS....apparently when Dr, Gaito tested me for Lyme and found out I had been "cured"...ie test came up negative (I had already taken several courses of Doxysicline)...but given my symptoms she tested me for APS and other Autoimmune Disorders.....SHe is an excellent MD....really listens...none of my other doctors thought of testing me for Autoimmune Disorders!

I am feeling great.....in addition to APS I have Unspecified Mixed Connective Tissue Disorder...I have been

taking 320mg/Aspirin and 200mg/Plaquinil 2x/day for 4 years.

Dr. Gaito is located in Basking Ridge New Jersey....where are you?

[dar7 in reply to Hidden]

thanks so much for that info so I guess you are unable to come off thinner even if lyme is so they say gone maybe I can suggest to our llmd to test for other autoimmune disorders also we go tues we are in northern VT but if we don't get answers soon I will look up your dr. thanks so much again

[Hidden]

I can live with Aspirin 320mg/daily....

[jetjetjet]

Dar whom @ Dartmouth is treating Mike ?? i live in southern N.H. and have had alot done in Leb. there are some great Dc;s there.

[dar7]

Hi Jet it is actually a dr outside of Dartmouth his name is Dr Rex Carr he is a llmd what were you treated for I'm still a little leary of dr carr Mike has been to DHMC for alot of things and yes they are very good but I don't think they deal with cronic lyme who did you see there thanks so much I would like to get another opinion about the LAC issue we did see Dr. Ornstien she was the one that discovered it also went to another Hemotoligist in wilder they both agreed Mike should stay on plavix Dr Carr is starting very low amount of amoxicillin and stay on thinner then increases dose of antibiotics as we progress