i know none of you are docs, but most of you are pretty darn smart and/opininated so i'd love to get your feedback.
i saw the illustrious dr. k (seattle)last week. i hold him in the highesst regards, and am not interested in any disparaging comments about him. so if that is what you have to offer, please hold back.
saw dr.k last thurs. as soon as i reconnected with him after not seeing him for a year, i recognized that i am once again in the hands of a true healer...a brilliant doctor, researcher, scientist who is intrigued by his patients difficult, complicated cases and truly is passionate in wanting to guide you through to recovery.
this feeling is sooo special to me...because i have yet to meet/find it amongst the 50+ docs i've seen over the past 2+years since crashing down so ill.
doc k truly wants to aid in your healing and he is constantly learning and incorporating new ideas in theories in practice. i feel secure when working with him.
now here's the details of the proto he prescribed: i was art'd for all these.
amantadine to fight down viral levels: hi in cmv, ebv,hhv6, parvo 9 and various other players. he feels my profound fatigue is directly related to the high viral titres
kmt minerals: special blend of minerals and amino acids derived thru volcanic ashe...dirt meds :0 should aid in bringing down, bacterial, viral and fungal loads and rebalance mineral imbalances in the body.
ketotifin: anhistaminue used in europe on label for asthma. used in my case to tame mast cell allergic response created by released histamines. should help to lower inflammation and balance stressed out adrenals.
sublinqual heparin to aid in smoothing out chunky blood (develped thru longterm chronic/illness/infection.
zithromax (continued by my sf llmd) 250/mwf add mepron in a few weeks once body adjusts to other new meds.
possibly add benicar, if see no results w/ketotifen. (i may have sarcodosis, if so benicar could help me).
5 days into some items on protocol, i'm feeling punkier than ever...super/duper tired and lots of pain...a little dizzy and blackoutish too.
i'm going give him go for the next several months and see where it takes me.
i'll keep you posted.
take care, lisa
[ 29. July 2006, 08:03 PM: Message edited by: lisag ]
Posted by SForsgren (Member # 7686) on :
Dr. K is one of the few, in fact the only, person that I would even consider solely putting my health in his hands. Most other doctors don't even come close. I agree with your observations about Dr. K and find him to be a sincere and caring doctor with much experience that brings so much to the picture.
I would just ensure that Dr. K is aware of the other things you are doing through your SF LLMD as you likely don't want to take things that are blocking you. Otherwise, looks like you are in good hands and I look forward to hearing of your improvement over time.
Be well
Posted by Lymetoo (Member # 743) on :
Aha! Sublingual heparin! Worked for me!!
good luck. I think you're on the right path!
Posted by seibertneurolyme (Member # 6416) on :
Regarding the amantadine -- hubby has been on this for about 3 years. At some point during this timeframe he has tested positive for active EBV, CMV and HHV-6.
Can't say whether this anti-viral is effective on these viruses -- some docs say he has had the viruses all along but previously was either not producing antibodies or they were bound up in immune complexes. We have not had the money to retest and did not feel these viruses were a significant factor in hubby's health.
Hubby also has Borna Virus which has remained elevated the entire 3 years -- retested a month or so ago. This is the virus he was trying to control with the Amantadine. He takes 100 mg 2 times daily.
As for the sublingual heparin -- we stopped that as it was so expensive and then switched to shots for a couple of months. When hubby developed skin sensitivity I switched to doing IV heparin -- have done that for a year or two now.
We gave up testing for hypercoagulation as well -- repeated the HEMEX test 3 times and it was worse each time. Tried oral nattokinase and oral lumbrokinase but did not seem to be as effective as Heparin.
Am rather surprised that you are reacting so much to your protocol, but if you have never treated hypercoagulation my guess is the heparin is the culprit.
Good luck.
Bea Seibert
Posted by minimonkey (Member # 8693) on :
I'm not an expert by any means (but I *am* opinionated ) -- sounds like a well rounded, thorough protocol to me.
A lot of folks seem to have good success on the heparin, and there is evidence that it helps with babs treatment quite a lot. I've been addressing hypercoagulation with supplements recently, and it (or something, anyhow) is really making me herx -- I think it really helps the drugs do a better job of killing off the nasties. I haven't changed abx/other meds in a while, so the herx is from one of the supplements/herbs/etc. that I've added, I think.
I've learned a lot from what I've read of dr.k's material...
Posted by minimonkey (Member # 8693) on :
I forgot to add -- I'm beginning to believe that there is a viral component to these illnesses for most of us ---
Virii that generally remain latent and don't cause symptoms in a healthy person are a whole different kettle of fish with immunsuppressed folks ---
Posted by GiGi (Member # 259) on :
I don't think you expect my input, but I will anyhow. You are in the best hands. I have not wavered from that feeling since the first day I met him years ago. And he is so human - a genius with a very simple mind. Sometimes a little boy, who loves to get a piece of Marzipan, a piece of homebaked bread or a cup of Kefir for which he humbly thanks with a bow.
The world needs more of that kind. God, do we need them!
![[Smile]](smile.gif)
) -- sounds like a well rounded, thorough protocol to me.