My LLMD is really a DO that I went to see because he's a specialist for CF & Fibro. He believes there are many reasons for a person to have CF &/or Fibro and that Lyme is just one of those reasons. I can understand that because I also have other viruses that are having a party in my body now as well: EBV, CMV, HH-v6, etc.

My LL-DO ALSO has LD - along with members of his family - and he thinks long-term abx use is really not good - that it's a vicious cycle of use that wreaks havoc on your stomach & other organs.

I really do like this doc & believe he is sincere in his stance & he has a compassion about this disease that other docs don't have - or can't have - until they experience this nightmare called lyme!

And I do understand his point about the abx, too - I'm just not convinced that the Samento is going to work.

He said the other option is to do Marshall Protocol - which does not thrill me in any way. I live in Fort Worth, @#$# it! It gets so @#$% hot here in the summer, and I'm also an avid gardener - provided I feel like getting out of bed. I can't imagine wearing long sleeves & a hat year-round. (People already think I'm kind of nuts as it is right now...not that I really care a lot)

I've asked the board for referrals to other LLMD in my area - but the only referral I've gotten is to a doc not taking new patients & to a NURSE that practices in Austin. That's a bit of a drive for a person that doesn't feel like getting her @$$ out of bed.

I would like to hear from anyone who has done the Samento protocol &/or the Marhsall Protocol & what kind of results you've experienced - good or bad.

My primary doc wants me to see an infectious disease doc - but I don't know if he's going to be an LLMD & even if he IS - I would still have to make the decision between alternative & mainstream.

I am so confused right now!

Thank you for any help you can give!

DonnaReagan

There are others here who have used alternatives so I hope they will advise you as to how well they work. I have stuck with abx because I tolerate them well and believe they are needed to kill the little beasts.

Many PC's recommend that their patients go to an ID doc. Most will tell you that it was a complete waste of time. They are into denial of this disease....big time!
Be prepared for it if you do go.

quote:

---

Originally posted by DonnaReagan:
My LL-DO ALSO has LD - along with members of his family - and he thinks long-term abx use is really not good - that it's a vicious cycle of use that wreaks havoc on your stomach & other organs.

---

that's a very fair point, but the World Health Organization recommends 2 yrs of antibitocs for tubercolosis for example, much longer than the symptoms even last.

and minocycline is used for years on end for acne, and that is with minocycline having known long term possible side effects, compared with other abx.

and he wants you to do the marshall protocol, which is.... long term minocycline (and zithromax). that's his alternative to long term abx? long term abx.

Either one MAY be a legitimate option, but the only treatment with a reasonable record of success is long term, high dose antibiotic treatment. Not everybody get better with it, but many do.

Maybe Samento, or the Marshall Protocol will turn out to work for some people. You can certainly try them if you choose, but I would do some serious research before making that choice.

If you read through the thread Success Stories you will see that people do get better using antibiotics, often in conjunction with alternative therapies.

Most people do have to travel to see a truly Lyme Literate MD. It is worth it to see someone who is well educated on this. To me, a LLMD has done real medical research on the possible treatments, and has a variety of well thought out protocols to offer.

LLMD does not mean someone has HEARD of Lyme, or even that they TREAT Lyme. It doesn't mean they HAVE Lyme. It means they are well read (Literate), and can back up their opinions with the valid information.

My LLMD is a naturopath, and even though he prefers alternative treatments for most things, for Lyme and coinfections he has found it is necessary to use antibiotis.

Often he includes herbs and other alternatives, but he only uses them alone when the patient cannot tolerate the drugs.

Your Osteopath may be what we call Lyme friendly. He is open to treating, but still may have more to learn. That could be good, if you are willing to educate yourself enough to make choices, and he is willing to go along with your choices.

Do some more reading. Especially look through Dr. Joseph J. Burrascano's Treatment Guidelines and the entire International Lyme and Associated Disease Society site.

Take your time to learn enough to make good decisions. Learn about the politics of this illness. If you've had this a long time, you can take a little longer to make your decision.

Personally, I read everything I could for six months before I decided what to do. I continue to read everything I can get my hands on, and try not to stay stuck with one point of view.

I voraciously studied the Marshall Protocol when it came on the scene. I decided it wasn't convincing enough for me, even though some people I respect are doing well on it. All I can say, is it was the wrong choice for me. Maybe it is good for you, but make sure you understand it first.

Have you seen the Seeking A Doctor forum?
Maybe you and Donna should post there for recommendations of llmd's. Names will be emailed to you so have your email there, too.

As far as rules, we ask that you not post Doctors names, as some prefer not to be known as Lyme doctors. People use initials, along with a location. To give details people send a private e-mail.

Other than that, you could read the rules for board participation.

Certainly share your experience, and what you have learned.

To learn more about mino, do a search along with the name TX Lyme Mom.

I have taken saventaro, a capsule form of samento, on and off for about a year. It did support the immune system, and also seemed to help address a latent bartonella co-infection. But if I had the year to do over, I would have opted for aggressive babs and bart treatment, and gotten them over with. Always make sure you've gotten rid of co-infections before spending a lot of money on Lyme treatments.

I'm glad you're joining us and this is a great place to be a part of.

Fyi, I'm currently using only alternative treatments and since August 2004 I've discovered great alternative programs, of course from LymeNet chat with others, which helped improve my symptoms about 80%.

I cannot say this is the best method for everyone since we all must choose for ourselves. What I could tell you is that my health improves tremendously and I'm very dedicate to my treatments and that's very important.

If you or anyone else interested in all programs that I'm currently on or completed please don't hesitate to email me at [email protected]

The one program that I highly recommended is podi patch, www.podipatch.com , which is very beneficial and I'm sure many others on LymeNet are using it with many success as well as a few with complaints. Well, that's how it is with any type of treatment. I'd found that I do not allow any difficulties of the moment to stop me in my journey. I will achieve the rewards and I am so far. I am more than happy to share and pass along great info to all.

I welcome any request of my successful programs if anyone email me. Good luck to all.

I know how difficult it is to travel with lyme. Sometimes, I swear I will never get on that train and travel to see my LLMD again.

At times, I have felt like getting off the train and just laying along side the road until I felt better out in the middle of no where!

I have found that sometimes I am fine when I travel and other times I am not.

The trick is hoping that the trip will be one of those times. I also find that traveling in a car works better for me most of the time than traveling on the train or bus.

You'll get to know what works for you.

Good luck. I know seeing another doc is not your idea of fun right now, but it is what popped in my lyme brain when I read your post.

I do not mean to offend here, but your DO does not sound like an LLMD to me, but rather like a D.O who is sympathetic to Lyme.

We'd all like to be able to avoid antibiotics. However, it seems that people that get better/well/totally recover are the ones that have had long-term, high-dose antibiotics - most likely in conjunction with supportive "alternative" therapies.

About a year ago, there was much talk about Samento. I took it for several months and it didn't do anything. I have since posted, and so have others, asking if others are still on it and how they're doing - there's not really any feedback.

I do know one person who took it for something like 9 months, felt great, quit - and then relapsed within 3 weeks to square one. She is now doing long-term/high-dose antibiotics.

Marshall Protocol - can't comment, it's very new, and I'm "watching" the few who are testing it.

It's unfortunately, but sometimes necessary - if we want to get well - to have to travel to a good LLMD. I travel 7,000 miles each time I have to see mine.

I know how confusing all this can be. The MD who first correctly diagnosed me with Lyme Disease was also a D.O. who had LD. She started me on Doxycycline and had the foresight to send me to a specialist for more agressive antibiotic therapy, as my Bb load was very high.

She sent me to an IDMD. She also suggested I see an LLMD for another opinion. The IDMD that I saw immediately sarted me on a high dose of IV antibiotics. As an adjuct I also saw a Nutritionist/Chiropractor. My IDMD suggested a chiropractor. The Nutritionist/Chiro was adamant that I stay the course with the abx. He supplemented that with various probiotics, digestive enzymes, diet changes and trigger point therapy (touch, not needles).

My D.O. was my primary through most of this. It was a very good team.

The LLMD I tried to get an appointment with was expensive, not able to see me for a long time, wanted cash upfront and, did not accept insurance. I decided it wasn't worth the stress to deal with him. And, although he claims to be Lyme Literate, his credentials were far from it.

My point is that you need to do some research and you need to see an MD, or a team of MDs, that you feel comfortable with. If travelling is going to stress you out - don't bother. You can work with your health care providers on how to treat you. As River mentioned, you should read and study as much as you can about the various protocols. YOU are the one hiring the MD. YOU can suggest how you think you should be treated.

My IDMD and I discuss every protocol, including the alternative ones. He is mostly familiar with abx but, he is willing to listen and learn about alternative protocols. He reads the same stuff I read.

I really don't think it matters much if the MD is a D.O., an LLMD, an IDMD or a naturopath, as long as you both are willing to discuss and try different therapies.

In case you haven't figured it out yet, there is no sure-fire cure for LD yet. Every protocol we try is just that, a trial. Some day there will be a magic pill that will make the next generation of Lymies all better.

Go with your gut and do what feels right and is the least stressful to you. I have been on different protocols over the past 24 months. Right now, I am on one that seems to be working. But, it took some trial and error. I chose to work with an IDMD who is close by and makes himself available to me - this is comforting.

BTW, my D.O. is Lyme free. She did very agressive abx for months and is doing fine now. She steered me in the right direction, I think.

Read up and take care.

You mentioned Marshall Protocol. Use the search feature at the top; upper right, look for the Marshall Protocol in subject line.

Look in medical questions, and for poster SHELLY or Shelley..sorry, my niece's name is that too & I get them confused!

Look for any date; enter key to search.

You could look for MP spelled out, and there has been a lot of discussion here about it from others.

Best wishes to you. Betty G., Iowa

If you have NOT seen Treepatrol and/or Tincup's NEWBIE LINKS, print it out when you find it, and mark off as you look at info. Enough stuff there for 2 months of reading plus! Here it is now for you; copied it for someone else too.

WELCOME To LYMENET

Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.

Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
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If this were my first time to be diagnosed with something where docs were at odds with each other over appropriate treatment - I would probably be really overwhelmed....OK, I'm still overwhelmed...but at least I'm partially experienced.

As a person with interstitial cystitis (IC) - I am no stranger to medical controversy....or trying to find a doc that will treat me according to my specific needs. (In the case of IC - that means treatment without torture...I digress.)

I have taken my time in posting again, as I've been knee deep reading, cleaning my contacts, reading, reading...and making phone calls.

I'm excited to report that I have found an LLMD (whom many would agree is an LLMD because she's a member of ILADS). She's a neurologist AND she can see me in mid-Feb....AND she's even on my insurance plan which is like a bonus, right there!

The only down side I see right now is that her office is in Dallas, and "Donna don't do Dallas" 'cause Dallas drivers are idiots. I must now add "find driver" to my to-do list.

But seriously, I'm just happy & grateful to be able to get a second opinion without having to book air-fare!

I've heard from so many of you, and received a few emails over the last couple days and my heart aches for you all - for all the trials you've had to endure...just with trying to find appropriate treatment, not to mention the disease process itself!

I know many of you are in "worse" shape than I am now, and it speaks so highly of your character & compassion that you take time to take us newbies under your wing in order to lead us in the direction that you feel most confident.

I realize this journey, while challenging & sometimes terrifying for us all, is also an individual journey.

I thank you for sharing your experience on this "path" with me.

I'm sure I'll have more questions to follow!

I switched from an LLMD to Dr. L.S. who is a D.O.(CFIDS/FM) in Fort Worth in order to pursue the MP after a serious relapse following heavy duty ABX for Lyme.

I feel the MP is the best thing that I've ever done in my long history of Lyme treatment (including 17 months IVs and a variety of natural, adjunctive protocols); however, I can understand if it is not something you feel comfortable pursuing right now. I studied it for a long time before committing to it.

The lifestyle changes (hat & gloves) take some getting used to, but the health that comes with those changes has made that part of the protocol something that is easy for me to pursue.

Besides, my friends and family get a huge kick out of people running up to me who ask me if I'm famous before they proceed to tell me where they think they've seen me before. I would hate to deprive them of all those giggles at this juncture.

I've been on the MP since July 04 and am in phase 2 now but I haven't had time to write up any reports because we got married over the holidays and it's been really busy around here. To say that I'm thrilled with my progress barely even sums things up.

It's tough picking one's path out of this awful disease. I'm wishing you every success making those difficult decisions.

When I finally got the lyme diagnosis I began treatment with a top llmd. Its been a roller coaster ride with an upward trend.

Today I am thrilled at how good I feel and a part of me can't believe it since its been so long! Most symptoms have disappeared, a few are still around but less severe. And I continue to improve. I'm enjoying a more active life again - I thank my lucky stars every day many times a day.

I've been on orals the whole 20 mos (Doxy, Omnicef & Biaxin, Zithromax & Flagyl).

Abx work for me, however I believe each person has to find what works in their particular case. There are many variables. Good resources is key (find a doc with the best track record) and hit the infection from different angles.

My best attempt at a prolific reply.

Where do we begin, where do we end??

I have no clue, after two years plus.

If we are in danger, we begin controlling the infections......

Then we end engaging the immune system....in a way in which it can control the infections.

Thet's all I know after all this time.

My son and my immune systems after long term ab's have been crippled, yet the ab's for us were life saving..esential.

How to get from here to there..(our IgM's have both plummeted on ab's..IgM serum, not WB..1st line of defence)..we are with crippled immune function now though now symptom-wise, functional.

How to get from here to there...

Mo