posted
My LLMD has recommended that I consider consulting with DrK in WA state. He stated my condition is so fraile that he would be more comfortable having a another doctor onboard with my treatment.
I have read some of DrK's website and now hoping to make personal contact with DrK patients.
In particular I am wondering about: -your experience/results/opinions re DrK? -cost of visits (1st visit and followups)? -typical frequency of visits? -how accessible this doctor is? -anything else you think I should know but haven't thought to ask (lymebrain)
I do not live in WA state. I am bedridden most of the time and too sick for frequent travel. But, due to my fraile condition, my LLMD thinks a consult with DrK could be valuable, if not vital.
Also, any recommendations for any other LLMDs who are very good with dealing very fragile patients where the patient is inexperienced with lyme treatments.
I have substantive cognitive problems, and need to ensure I secure a doctor who takes the time needed to work with inexperienced patients who are this fragile.
Unfortunately, I was not diagnosed with lyme until after becoming bedridden and so much deterrioration happened:( Was diagnosed with severe FM/CFS for 15 yrs. Tested Igenex positive for Lyme and Babesia Duncani at the end of last summer.
I would appreciate good LLMD recommendations for a doctor whose practice can support time and focus working with a patient on my level of deterrioration. I am in CA/SF-SAC bay area.
I sincerely appreciate any help, thank you!
[ 02-07-2009, 04:51 PM: Message edited by: jam338 ]
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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bettyg
Unregistered
posted
jam, can you define "FRAGILE" more? i have several things in mind but i want to make sure i understand you 100% ok!
check your profile for info i have on dr. k and San Diego llmds! never met or seen him; it's based upon comments from his patients!
best wishes; you've also got some really good drs. in your area.
please send me a PRIVATE MESSAGE, pm, it's the 2 people standing together. go to my name here, and click on 2 people standing together.
please send me the name of your current dr. ok by PM! thx
posted
hi Betty, thank you for your reply. I'll PM you as requested.
In reply to "fragile", here are a few examples:
I have been bedridden the better of 4 years. Can barely stand long enough to brush my teeth. No independent living capability. Husband has to shop and prepare all food.
Can no longer drive due to severe cognitive problems. Severe physical limitations where I am unable to leave my house for weeks at the time.
For travelling to doctor appts I can't ride sitting up. Husband had to buy a minivan so I can ride on air mattress....cocooned in memory foam pillows.
I have to be reclined with feet elevated or it makes all symptoms, including heart symptoms etc much worse.
I can barely cognitively/emotionally hold a short conversation. It taxes my brain too much where I almost always break out in a drenching sweat, brain becomes overwhelmed, and I start to cry. This happens to me while I am in his office as well.
Have severe fatigue, pain, bladder, cognitive, and sleeping problems. Have to travel with a bladder jar in the vehicle.
Have severe light/sound sensitivity frequently requiring sunglasses and earplugs. That always happens when I go to his office, and is made much worse by the long wait. I have to sit reclined with feet up on husband's lap. When a room in the back is open they take me back to lay down.
My LLMD (DrH CA) is very experienced. It is a very busy practice. He said I am among his sickest patient group. Over the past 8 mos we have treated parasites, yeast, inflammation, and trying to build my systems up so I can tolerate lyme treatment. No noticeable improvements in my symptoms; instead progressive deterroiation.
I also have other viral issues with EBV, CMV, and HHV6. Along with thyroid and severe hormone problems. We also suspect mold problems.
However, it is all very confusing. Through recommendation of the naturopath who consults with him, I took the Visual Contrast Sensitivity test on chronicneurotoxins.com. My score was 83 and the results said negative. I have no idea whether 83 is on a borderline or what. My brain won't hold together long enough for me to research the site further:(
The naturopath did ART testing that showed findings that concern him. As I understand it, the naturopath has suggested to not treat lyme until other things are first improved.
My body isn't regulating its temperature. Within minutes I go from raging drenching sweats to freezing and needing a blanket. Body temperature is typically 94-96 range.
If someone breathes on me it seems I get everything. At this point, it feels like every body system is substantially out of whack.
I think his primary concern is that my detox systems are not working right. I have a methylation pathway block (lab tested result).
He is concerned about starting treatment and making me much worse than I already am.
[ 02-07-2009, 10:08 PM: Message edited by: jam338 ]
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
Hi Jam, I'm new to this board, but I believe I remember from another board that my son has the same LLMD as you. It was also suggested to us that we see Dr. K as my son is very ill with complications. Can we PM? thanks!
Posts: 9 | From CA | Registered: Feb 2009
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bettyg
Unregistered
posted
jam,
my heart goes out to you for all you've been thru these last 4 years of this miserable disease.
check your profile, i'm sending you 1 other idea i have ok!
so it seems you are seeing 1 of best in your area!! i'm glad the newbie above me is going to contact you and you 2 can share things!!
brenda's daughter, sami, has same troubles traveling and her head must be covered entire trip of 14-16 hrs. i'll send her a note about you, and hopefully, she can stop by here as time permits ok!
hang in there; so sorry this damn disease has taken your quality of life these last 4 years.
that's one thing i've very thankful for; i was just bedridden for 2 wks. after being diagnosed with mono!
just sick since for last 39 years; so i count my blessings daily and each time one of your true stories touches my heart!
i'll send you my idea before i forget it!
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Dr. K. is difficult to get an appointment with because he spends a lot of time in Europe. Your best bet would be to call his office and get all the info you need there. I was his patient for a long time, but it was even difficult then, now some years ago, because of his long absence. Most of his treatment revolves around muscle testing and for that you would need to be at his practice. Maybe your doctor could consult with him, but that would also have to be arranged with his office here in Bellevue, Wa.
I wish you the best. Per our own personal experience, you may want to consider Bionic880 treatment. It is the quickest treatment and the most effective that I know of, and someone in this country will have the instrument soon, I hope.
Take care.
P.S. If I had to do Lyme over again (God save me from it), I would also look into the www.allergie-immun.de treatment first. A lot of problems can be cleared with that.
Posts: 9834 | From Washington State | Registered: Oct 2000
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Gee, GiGi, that site is in a foreign language. Tried to convert it by babelfish but it would only do the top of the page. Is it German?
Jam, I am so sorry that you are in this position. You sound similar to someone I know that has Lyme. Although the road is bumpy, she is able to tolerate some treatment.
I am wondering if you wouldn't be a candidate for how Dr. M of Colorado treated his patients? He used baby doses of antibiotics until they could tolerate higher doses. Many were able to achieve a higher level of health by this method. Would your doctor perhaps consider trying this method?
If Dr. K is hard to get into, I have heard that there are some physicians that have trained with him. Perhaps there is one closer to you, thereby avoiding the long trip. I don't know if his office would give that information out or not, but it would be worth a call.
Just some ideas that I would try if I was in your situation. Hope that you find your answers quickly.
Best, Karen
Posts: 1856 | From Maine | Registered: Jun 2004
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Having a very difficult day so this is short. I know y'all understand. I want to thank everyone who has replied on this thread and thanks to those who have privately PM'd me. Any and all help suggestions are VERY much appreciated.
I am so sick I don't know what to do. It appears DrK is not likely a viable option for me. I have to face the fact that I am too sick to travel to Seattle or outside of driving distances of CA.
Apart from that, it seems DrK's focus (understandably)is more global. His focus appears to be educationally training other doctors to ensure his insights, knowledge, contributions to medical legacy are passed on and not lost after he is gone. I get the importance of that, and that it better serves mankind as whole long term.
Just not sure where this leaves me at this point.
There is a physician group (Santa Rosa, CA) who is more locally accessible to me. I would be most appreciative for PMs from others who know about or have experiences with this group, particularly with DrG.
DeeTee52, I am so sorry your son is in similar shape, bless his lil heart. Yes, absolutely we can correspond about mutal experiences with C.R. I will reply further through PM in response to your PM.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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