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Hi, everyone,
I had my 1st appt w/ a rheum/LLMD this week. I saw Dr. M in Rockville, Maryland.
Note: this post discusses Vit D. Please note that I am only repeating what the doctor said. Please feel free to do whatever you wish with this information. I know no more about D than what is posted here. People make different treatment choices re D. My rule of thumb is that if a person isn?t comfortable with a certain choice, it is not the right choice for them. I respect everyone?s Vit D treatment decisions. If you are seeking more info on the topic, the search feature on this board is a great place to start.
First off, he is brilliant. Like in another realm brilliant. He?s an MD but worked a lot as a scientist. He?s also ?into? a lot of stuff. Founded some biotech companies, invented a water faucet, among other things. Really fascinating (and nice) person. He tossed out so much medical info I wished I could have stayed all day.
He?s very on board w/ infectious roots to autoimmunity. He says last year he treated 9 RA patients w/ abx who?s RA ?melted away.? He says that the academics seem to like studying overactive T cells but that all that research isn?t worth all that much if the cause of the T cell activity is infection. He thinks we?re 1-2 years away from the infection/autoimmune connection entering the mainstream. (Wow!! Hope he?s right!)
He believed in holistic treatment, thinks complementary medicine should be more widely accepted, says that ot will take ?more than one thing? to get me well.
He also believes it?s important to heal the gut.
He usually prescribes something to open blood vessels to allow the abx to get where they need to go. He says there are several options here: baby aspirin, bolouke (enzymes) and benicar. He says benicar is also an anti-inflamm, which helps people feel better.
He?s not into the MP, though. He calls the MP a ?phenomenon.? He doesn?t like it that the MP site disallows dissent. He says that he?s done molecular modeling and that the conclusions that can be drawn from the method are very limited?and Marshall has drawn quite a sweeping conclusion. He is pro-D supplementation and wants his patients around 70-80. (He starts the supplementation slowly.) He says D prevents cancer, fends off the flu better than the vaccine and regulates the immune system. Regulates, he says, not suppresses. He says that dysregulated D metabolism, if it exists (he tests for it), usually improves once the patient is on abx. His explanation for the D dysregulation is that the patient is low on D in the first place?somehow the parathyroid figures in here, too. I really didn?t understand the ins and outs of that last point, but I?ll put it out there for those who are more scientifically minded.
He?s into detox and offers a milk thistle based liver support supplement. I had a heavy metals test done this fall, though, and I came back in the normal ranges. He?s not sure that I need to start a big detox program now (ie, sauna), but says I might need to later because we might be mobilizing undetected heavy metals. He doesn?t want to throw too many things at me at once w/ the result that we don?t know what?s working.
As to me, he says I?m from an endemic area (MN) and fit the profile of someone infected in the past who ?crashed? due to stressful life events.
He noted my indeterminate on me IGeneX band 31 and said it was significant b/c the only way you can get that, apart from infection, is from the vaccine, which is off the market. Since my test is not technically positive he says I won?t get ins coverage for IVs but that such doesn?t mean we shouldn?t treat w/ orals. (Query whether I?m sick enough for IVs, but what do I know! J)
On examination, he noticed that my shins were ?puffy.? He had to press through a layer of ?puffy? before feeling my tibia. (this despite my always[/i] having sed rates in the basement and a really low cardio CRP.) He also noticed my slightly blotchy skin (no other doc has) and said that means I?m hypercoagulating. I also get blue fingernails and toenails. He also noted dry skin, a lack of energy and cold intolerance and suspects I might be slightly hypothyroid. (It all sounds like a broken record, doesn?t it? J)
He?s running a bazillion more tests?more inflammatory markers, more coagulation markers, and more infection testing. Since I have so many lower body symptoms he wonders if bartonella might predominate.
He doesn?t like the term ?co-infection? because he says you can have just bart, or babs, etc. by themselves.
In the meantime, I?m supposed to start bolouke to get the blood flowing.
OK, hands gave out. Bye!
Oh my gosh, this doctor sounds just like my LLMD! 🙂 After all my frustration of firing doctors because I just could not accept what they were selling, I landed in the office of the perfect doc for me. Your guy sounds like a clone, but you're in the same boat of having to travel a ridiculously long distance. Just the fact that he noted your blotchy, puffy, shins and even knew to test for hypercoagulation is very impressive. My skin is also blotchy and puffy, and I tested high for hypercoagulation, but when I've told others to ask their doctor's about it they get the, “huh?” I've had two people say their doctors are not opposed to ordering the test, but are told to ask me what lab and what tests specifically. 😯 As serious as this is, how can doctors be so clueless? My doc wants me on Heparin injections (2 x day) which I have strong arguments for not doing and since I'm getting some improvements, he's letting me continue my routine which involves digestive enzymes and sauna……..slow, but some improvement.
I'm on board with everything he's telling you. I'm due to start Bartonella treatment soon which I feel is one of my nastiest infections so I can fill you in later on how that goes.
Thanks so much for posting, Maria. We all learn so much from each other………gotta keep those docs on their toes, right??? 😉
Wow, I'm super jealous. That doctor sounds great. I would love to have someone like that! Thanks for posting and keep us updated!
Good luck!
Tom
EDIT: Just noticed your profile says you are from Florida.. So did you travel all the way to Maryland to see him? Are you going to have to do this often?
Hi Marie,
That does sound like a VERY awesome Doc… if I ever win the lottery maybe I will go to..lol.. A good Doc means everything. He sounds similar to mine I really like his viewpoint. But I have one question I was so excited when I went to see my Dr and I didn't listen and take notes so I missed something. About the baby asprin was he implying that is something you should take daily as I swear I thought my Dr said the same thing but then I thought I must have been mistaken. I emailed him to clarify but had not heard back yet. If you could elaborate that would be great…
Thanks
Marie, thanks for the wonderfully detailed update about your new Lyme doc! It sounds like you'll be cared for in a very comprehensive, whole body way. Isn't it wonderful to find physicians who spend time explaining things to us? Like you, I often feel like a tape-recorder would be a good accessory when I go to see my doc, as he shares so much info with me that it's impossible to absorb it all. Usually my hubby makes a good second pair of ears, though, when the brain fog sets in and I can't remember details.
So happy for you that it all worked out and you're now on your way! You must be relieved, as it's been a long time in the works. YAY for you!!!! :roll-laugh:
Peace, Maz
Kim: yes, I don't understand how doctors can miss the coagulation issue. My arms have been blotchy for a good long while, and no other doctor had said anything. I have to get some more blood work run later this week, then I can start on the bolouke. What enzymes are you using?
Would love to hear about your bartonella treatment when it starts. Thanks! Fellow patients sharing with each other is one of the best ways to learn about all this!
I ask the doctor about my theory that going off gluten made me herx. When I changed my diet, I had horrible pain in my Achilles, Plantar fascia and palms of my hands (all bartonella places, incidentally). He said it was “very interesting” that such a thing happened and that going off the gluten may have unloaded my immune system such that I experienced “some kind of herx.”
Tom: yes, I flew from Florida to the DC area, where I have family, so at least I had a free place to stay. The office is also close to public transportation, which helped. I will go back and seen him in three months. Between now and then, though, he wants to have monthly phone appointments. After the three-month appointment, I only need to see him once every six months.
One of my reasons for picking this doctor, in addition to the above, is that he leaves time in his schedule for new patients. I was able to call him in late January for an appointment in mid-February… and at the time he had several dates in February available.
Patchoulee: I think he mentioned the baby aspirin as one of several ways to improve circulation, the others he mentioned were bolouke and benicar. He wants me on an initial dose of four bolouke per day. That will be expensive, but I am hoping that this is the initial dose and that at some point I will be able to drop to a maintenance dose. I don't think his benicar doses are as much as you would find on the MP. He did not discuss putting me on benicar. I prefer natural products to drugs if at all possible. Plus my blood-pressure is always low, so that may have had something to do with it, too. We never really discussed the baby aspirin or what doses he uses with that approach. Sorry I couldn't be of more help!
Maz: yes, it is a relief. (Huge sigh!) It was so great to hear someone speaking the language we speak on this board!
Thanks, everyone, for helping me get to this point. I found the board in July and was all at sea. It wasn't until mid-December that I began suspecting lyme. But you all educated me about Igenex, LLMDs, etc. to the point where I was able to make an informed decision about treatment. Thank goodness for the Internet! (Never mind the gastroenterologist who told me “not to read things on the Internet because it only stresses you out. Just trust your [non-AP] rheumatologist.”)
Marie
[user=601]Marie[/user] wrote:
Kim: yes, I don't understand how doctors can miss the coagulation issue. My arms have been blotchy for a good long while, and no other doctor had said anything. I have to get some more blood work run later this week, then I can start on the bolouke. What enzymes are you using?
Would love to hear about your bartonella treatment when it starts. Thanks! Fellow patients sharing with each other is one of the best ways to learn about all this!
I ask the doctor about my theory that going off gluten made me herx. When I changed my diet, I had horrible pain in my Achilles, Plantar fascia and palms of my hands (all bartonella places, incidentally). He said it was “very interesting” that such a thing happened and that going off the gluten may have unloaded my immune system such that I experienced “some kind of herx.”
Marie, the products I'm using to thin my blood are Rechts-Regulat from Germany (super expensive and hard to get) and Neprinol (also expensive), plus one baby aspirin a day. The sauna has done wonders for circulation which has helped move that thick sludgy blood. Aside from the labs, I know it's working because my Raynaud's is almost gone. The bacteria love to hide in that thick blood.
Interesting what you said about the gluten-free diet possibly making you herx. I've been eating GF for a couple of months now and the only difference is that my pH is finally in the ideal range, after being acidic for years, so maybe that's a sign my gut is healing, although it still hurts when I eat.
My LLMD has me on a chelating supplement now to dump my heavy metals load — mostly Mercury, which has me turned inside out for the moment.
The weird thing about Lyme is it's migratory nature, kind of like a box of chocolates………you never know what you're gonna get!
i am 3 mi away (5min drive) from Rockville, and never heard of this doctor, please someone give me info on this doctor, I would love to see him!!!!!!!!!!
Hi Marie,
Such good reporting from you. A good doctor is like a good wife!!!. I was wondering what amount of vit D he was thinking would be good replacement, or would that vary from person to person?
Darnell
Marie,
Awesome doc and an awesome visit! I'm jealeous! Hard tro find a good doc that understands and now how to treat what we have! Kudos to you for finding him!
[user=786]Anna[/user] wrote:
i am 3 mi away (5min drive) from Rockville, and never heard of this doctor, please someone give me info on this doctor, I would love to see him!!!!!!!!!!
PMed you!:)
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