nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Here i am having just seen my 4th LLMD/ND yesterday. I am cautiously optimistic. However I do not believe she/he has all the answers. I believe I need to find the answers. It would be wonderful to be proven wrong.
This one agreed with my diagnosis and treatment, just like 3 of the last ones did. After spending 7K to confirm my diagnosis, I am taking the same drug I ordered from India two weeks ago. In addition I am taking a huge amount of supplements. I thought I had the right supplements. Maybe I was missing something. It depends on which expert you are talking to.
For instance, the published LLMD, Dr. S, says boluoke does not work on biofilm because bioriflm is not a protein. The expert Dr. K says Cistus is the most powerful biofilm buster. I was on boluoke for two years until Sept 2013 when my blood showed "substantial biofilm". I am on it again but this time taking more of it more often. At $154 a bottle, I will give it a month. I am going to follow this exactly as directed and see what happens.
I will also take MY protocol, which is cistus, liposomal EDTA, Lipo vitamin C and glutathione, proactol and methyl cycle supplements. Why in the world are doctors still handing out tinctures and pills when everything can be made 1000 times more effective with liposomal technology?
This LLNP gave me N Acetyl Cysteine, which I am not supposed to be taking - being homozygous for CBS. I found it in the bag and shelved it for the time being. I was also given melatonin, which quit working for me years ago and gives me headaches but maybe this time will be different. And I was given L theanine, which I tried before and it made me nervous. Maybe this time, it won't.
As far as these doctor discovering anything - I knew when I had bartonella and suggested my own treatment. Same thing with babesia. When things did not work, I went to the GP and told him what I needed. I got better. I got worse. I told the GP to test me for PR and I was positive. I took horse wormer, started the diet and got better. I can't see GP any more as he is now a marijuana doctor. I ordered my own methyl cycle mutations test and had it analyzed. I requested heavy metals and environmental testing.
Dr. H by the way has very little to say about protomyxzoa. If PR is real, that is a very big stone he is not willing to turn over. Even if he wanted to address it, he can't because the state he lives in will not allow testing at that lab.
I would like to believe Dr. F is full of it because I don't particularly like him, having traveled thousands of miles to see what I thought was the best, only to be told he would/could not treat me. Even though I would like to believe PR is ridiculous, I have to say it is real. If your Best LLMD is not addressing it, having you tested and putting you on the diet, you won't get well.
I believe that WE are the ones getting each other well, more so than any doctor. I found out what and how much to take from kind people trying to help me on this site. i learned about everything here. I shared everything I know with you. We are the cutting edge of lyme research. We pick the brains of all the best doctors and share the information. We decide what works and what doesn't.
It would be heavenly to find "the guru of lyme", the one I can completely trust to get me well. I have struggled and worked so long and so hard, trying to keep on top of things with half a brain.
I am still trying to be optimistic.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
nefferdun, that was an excellent post!
Posts: 1885 | From here | Registered: Jul 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Still, a top notch LLMD would know the science of lyme, the detail that the ILADS researchers / presenters are talking about., even if not a member.
It's hard to say exactly what is meant by "ILADS educated" but I will try. Going through the ILADS physician training program is great, of course. But there is more to it.
Being ILADS "educated" is not an exact check list but that they have that scope -- they may not need to be a member or up front at meetings -- just backed up with the basics and up to date with as much knowledge as possible.
The education level is so very important. It can't have stopped when they graduated from medical college (as they barely get any lyme education there).
That knowledge about lyme / TBD can't be built on the CDC or IDSA or NIH, either.
It's also about knowing that every person with lyme is unique and they likely have far more going on than just lyme, far more. But no two are alike yet so much can be learned from all of their patients, and the group as a whole for what they face, etc.
just my take on it. I've never had access to a LL doctor for more than two visits, though from what I've read, ILADS conference presentations veiwed and what I need in a doctor (if I could afford one) . . . just my thoughts.
Respect for each patient and really being willing to "go there" with them, whatever it takes, how ever many changes or how much thought for what ELSE might work . . . through all this, should also be at the top. Can't have a good doctor without that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Well hopefully no doctor's education stopped once he/she graduated medical school.
I believe the vast majority of LLMDs (ILADS or not) have learned a great deal from their patients (at least the ones whose ears aren't plugged up with their own arrogance).
We are a unique bunch of patients. What other group of patients do you know who have had to take matters into their own hands and demand better testing, appropriate treatment, insurance coverage and legislation? It sure ain't the cancer patients.
Posts: 1885 | From here | Registered: Jul 2012
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Actually, come to think of it, AIDS patients had to do what we're doing now.
Posts: 1885 | From here | Registered: Jul 2012
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
my new llmd takes no insurance for the testing which was about $100. Treatments are around $80 every 18 weeks. That is it.
I rate my new guy a 9.9 compared to the previous one that wanted to put me on steroids, hormones, and everything else under the sun- and I felt terrible when I was with him
Plus he (old guy) listened to me, but HE was the Dr so HE knew best of course and wouldn't really budge from his protocol.
The new guy is insistant too, but the results are in the pudding. .... I am gettting better WAY faster with new dr than the other who was a more traditional LLMD type following what most of them follow.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
I agree that the good LLMD's should keep up with conferences and education. You can attend conferences without being a member!!!
A "good" LLMD is just that .. someone who learns from his/her patients and other doctors and is very educated on treating Lyme and coinfections.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Thanks beaches.
There is no argument about the benefits of seeing an ILADS educated doctor versus mainstream but Lyme treatment is not standard even among LLMDs. They have different opinions and different methods.
That is why it is important for us to keep up with the latest information. For instance, many of us have spent hundreds of dollars on methyl cycle mutation testing and analysis. This stuff is hard to understand.
When you hand your new LLMD your methylation results, he probably does not even look at it because it is too difficult for even him to grasp. He just hands you his recipe supplements for success without any regard for what your body needs or can tolerate.
I need a test and I need drugs so I am not going to argue. I just shelf the stuff I know I can't tolerate and continue to take what I know I can.
Most of us have a library of books on Lyme Disease. I sure do. Even these doctors that are supposed to be the best bash each other's theories and treatments.
Have you read Dr. S' book on bartonella? No one but him knows how to treat bart. It is a secret he does not share. You must go to see him. If you want you can pay $500 for a conference call but he won't tell you the secret because he can't advise you about drugs on the telephone. From what I have gathered from other's who paid for that call, HH2 in massive doses will help but the cure is sill his treasure and you need to see him personally for that.
Sure you should see the best LLMD you can afford but should you send yourself and your family into a financial crisis seeking that doctor when chances are it won't be the first one you visit? Sometimes you have to read and study and then trust your own intellect and gut to make the right decision for yourself.
Is there really a LLMD guru that leads all the others in the field, that cares mores, is better educated and up to date on every single aspect of all the latest technology and treatment? If there is, you and I won't be able to see him because when the word gets out there will be hundreds of thousands of people in line waiting to see him.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
quote:Originally posted by Abxnomore: Too bad there's only about three of them in the whole country, all unaffordable for most. And even with the best their success rate is still not that high.
Case in point. A counterpoint did not hinder the flow of the thread Abxnomore. It just added to the conversation.
posted
A money-back guarantee!
Posts: 845 | From Eastern USA | Registered: Jul 2006
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Well, if you scroll back to the first page, you will read the story of "aperture".
That is me.
The top notch Dr H saved my husband's life. An LLMD brought my little son back from autism traits to typically developing.
My family has truly lost EVERYTHING to treat with the best. I wouldn't change that for anything. I am so grateful knowing that I do not have to rely on nameless, faceless strangers to give me a protocol that could harm me...or heal me...who knows?
That's why I am so adament about being treated by a the best Dr you can scrape together...not taking advice from a stranger.
I may not have a full set of kitchen chairs, more than 1 outfit, but my husband is healed and my son is well.
Lyme is supposedly the disease for the rich...don't allow it to be...I didn't...even if that meant pawning my wedding rings to get to the best.
I am in the midst of being banned for good...to those who have supported me...Hugs.
Lots of divergent viewpoints. But there are quite a few things no one has brought up.
If I counted correctly hubby saw 11 different docs who would be called LLMD's during his 12 year illness. 3 of those were LLMD neurologists and he also saw the Dr B for awhile. And I am not counting all the alternative and ACAM docs he saw.
Anyway -- one major point that is very important to someone considering traveling to see an LLMD -- there are many restrictions placed on docs who see out of state patients.
Some docs will not prescribe meds over the phone -- every new med requires an in person office visit. That can become cost prohibitive if the patient has adverse reactions or intolerable side effects and needs to change meds in between appointments.
Also many of the big name docs have P.A.'s -- while they have training most do NOT have anywhere near the knowledge of the actual doc. And if you only see the big name doc every 3rd appointment or so treatment can get seriously off track.
And almost every doc hubby saw had a list of meds they were unwilling to prescribe due to potential side effects. Hubby had some of the best results with the more problematic meds -- quinine and clindamycin and levaquin and flagyl for example. Unless you know enough to ask -- the doc may not be willing to use all possible meds to try to treat your specific infections.
Someone did mention that Dr H because he is in New York cannot order tests from Fry Lab. But it goes beyond that -- he cannot order tests from Galaxy Lab either. No New York doc can.
Yes there are some labs that are better than others, but without Clongen and Fry bloodslides hubby would have never known he had such a severe babesia infection. And it was 10 years before anyone thought to test for babesia duncani (WA-1).
In my book a good doc will order a test from an unknown lab if the patient requests it and is willing to pay for it as most such tests frequently require payment up front even though eventually insurance may provide partial reimbursement. Tests from new and different labs provide learning opportunities for the doc as well as the patient.
The doc that hubby had the best relationship with both personally and medically was not one of the big name ones. The difference in the doc was that they did not watch the clock. They listened to the patient and were willing to try just about any med.
This doc was the first one who was willing to try malarone in 10 years since we never knew for certain if hubby's previous reaction to mepron was an actual drug allergy.
Not many docs give patients their personal cell phone number or will call hospitalized tickborne persons who are not even their patients. And not many docs will accept payment plans or barter with patients for their fees -- this doc has accepted artwork and even vegetables from patients in the past.
There are still some real compassionate docs who are in it for the patients. This doc probably does not have a super high success rate simply because many of their patients cannot afford the necessary meds or supplements to actually get them well. But the doc has not abandoned them or given up trying.
desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I also believe that a top notch llmd is willing to look outside of the Lyme box and consider additional conditions that could account for symptoms. My extreme pressure headaches were not all related to Lyme and babs. My llmd knew enough to order an MRI to rule out differential diagnosis. Glad he did because we found a rare and serious brain condition that required numerous surgeries.
A top notch is also open and willing to speak with with other treating doctors so everyone is on the same page. No hiding lyme needed. My current brain surgeon and llmd work together to ensure best treatment.
I appreciate my llmd's assertive presence and see that as reflective of his willingness to speak loud and have a voice in the muffled world of lyme disease. He has always shown humility and compassion in his own sense of humanness. But...he is not the cure all for everyone.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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