I had great results from the alternative treatment, but can't afford to continue it due to exhaustion of my emergency funds.

I though it would take me long time to get an appointment, so I called 3 different offices and to my surprise I got 3 appointments within next 3 weeks with 3 LLMDs.

1. Innexperienced - office opened just couple of month ago, LD patient himself, 3.5 hours drive from my home in Colorado. Takes no insurance. Very short waiting time (1-2 weeks).

2. NY LLMD in a big clinic with 17 years of experience. Takes Medicare. Usually doesn't take new patients, or wait is up to 6 month.
Expensive trip.A friend of my friend is a well established patient there. She is buing him a video teleconferencing equipment to avoid monthly follow-up trips from Maui (she is in different income category than most of us).

3. Mid-West/Hermitage LLMD with long experience, takes Medicare. Small office setting, GP & Internal med. Currently under review. Takes new patients 3-4 weks wait. Moderatly expensive trip.

Do I just pick one? Do I go for initial visit to all of them and them decide? How would you solve my problem?

I never thought I'll be so lucky to get all these appointments. I don't want to spoil the opportunity for making a righ choice. On the other hand I don't need to invent the wheel.

I appreciate any advise.
Take care, feel well!
Thank you,
Petra

It would probably be a less expensive trip for you travel-wise. He doesn't take insurance, but will file your claim for you.

Plus, if you are not able to continue alternative treatments because of cost, how will you afford trips and non-insurance accepting docs?

Think if expense is a biggy, you need to sit down and write down the costs to you of appointments and treatments at these various places. All the costs, including travel. If you need IV, will your insurance pick this up? Lots will not, especially beyond 4 weeks..

There is also a consideration of how sick you are. Something like a hierarchy in lyme docs:

Just getting started, not very sick, almost any lyme literate doc will do, don't need the big guns.

Then a mid tier for docs with more experience.

Then the big guns for longstanding or severe cases. These almost never take insurance because they have to use the most aggressive treatments and have the sickest patients. Tend to be the most expensive too.

Sometimes you can start off at tier I, try that for a while, then move on if not satisfied or needing more aggressive treatment. But it can take a while to see improvement, so you might have to stay with this a year to know.

(BTW, what did you mean about the doc being "in review?")

I have LD for 11 years with disabeling symptoms (severe pain, fatique, hypercoagulation, heart and lung problems, neuro and psychological issues, bone & joint pain and swelling, etc.) I'm on SSA disability for 10 years.

I have tried a lot of alternative treatment, as I was afraid of long term use of abx. Nothing has long lasting results so far.

The dillema is that the doctor close to my home is not very experienced and doesn't take insurance.

The far away doctors - both take Medicare, which is a big deal for me. But I know that travel is exhausting (I was a flight attendant for 10 years).

So the cost is about the same as far as the travel and office visits ($400 for the local), flight is about $200 plus car rental for 2 days another $80. Hotel before and after the appointment is the same. There is a shuttle from my house in Vail to the airport in Denver. I have to drive to Colo Springs for 3-4 hours. My friends can help me in New York with transportation and/or lodging.

I would like to get the best treatment for my late stage LD, so I can get out of disability. I don't think Dr. C is agressive as far as IVs ( I had no improvement on orals and don't want to waist time any longer).

I don't know what the "under review" means, but understant that Dr. is agressively treating LD, taking Medicare and BCBS, so the insurance companies don't like it.It was listed on the support group list of recommended doctors.

I'm inclined to use my friend's help to get to the top NY doctor. Other are easy to get to. If I don't like his aproach, I'll go to the one of the other two options and follow my gut.

Thank you for suggesting Dr.C, but I have canceled an appointment last year after learning his "sensitive" aproach.

I would still appreciate any suggestion as far as particular doctor's happy patients.

Dr. C uses more of an "integrated" approach, as he believes that just aiming abx at the lyme bug does not cure the problem. It is a multi-faceted approach, and has to be attacked from many angles, as in diet, candida control, co-infections, dental issues, detox, etc. Also, I have found him to be very flexible in targeting his treatments to the needs of each patient.

If the drug is administered in a clinic, hospital setting, or doctors office, the drug itself is covered.

I don't know how or if this will affect your decision, but it is something you should be aware of since you specifically mentioned IV treatment.

They hav congenital lyme and he is treating them. They are 6 and 9 years old. I wish I were seeing him as well and at some point in the future I will.

Right now I can only afford them as it is out of pocket until the insurance reimburses me.

I am am seeing a dr that treats lyme but is not knowlegeable and I feel like I have to know everything, which I don't, and can't remember even if I did, since I have lyme.

So you could post asking for information on those seeing Dr X in KS or whatever. To maintain everyone's privacy, ask them to email you.
http://flash.lymenet.org/ubb/Forum3/HTML/004140.html http://www.drcharlescrist.com

If you have hypercoagulation, it would be smart to find a dr who knows how to handle that if it's not already being handled.

BTW, Dr C takes Medicare.

Like I said, I am happy with my dr. Much better then any dr I have dealt with in the past at least!! Also don't forget, both Dr M and Dr B have been licensed medical dr's for years. Dr B was an allery specialist in KS for a number of years. Im comfortable with them. Email me if you have any questions.

Also, medicare may not cover you for an out of state appt if your primary care dr is here in CO-they are very picky about that. Does medicare even recognize Lyme as a chronic condition? Some insurance do not. Keep in mind that Dr M here in the Springs was severely disabled from this-diagnose with ALS at the time too and had just about given up on life. That to me spells experience right there!! Hope you make the best decision. Follow up appts are only $100.00 once you have your intial appt of $400.00 and medicare may reimburse a portion of it-you just have to file the claims yourself.

Nancy

You can call doctors in advance to ask whether a doctor uses, or would consider using, specific treatments. Try to learn about them in advance, and don't be afraid to call different doctors and compare notes.

You can also research which antibiotic combinations interest you, and ask in advance about these to see how open a doctor is to your input. If you ask right away for what you want, you are more likely to get it, or be turned down right away instead of wasting time and money.

Also, since there are so few LLMDs, lifestyle plays a role. People have very different values and goals in life, and it's important to find a doctor who supports your vision of what you want for yourself.

Compare to see whether a doctor makes his or her living exclusively from treating longterm Lyme, or whether the doctor has other sources of income. How isolated is this doctor from public view? Does the doctor do hospital rounds, or participate regularly in peer-reviewed events? Is the doctor in an urban environment, or in a pastoral one?

If you can visit the doctor's area, will the local pharmacists talk to you? Can you call the local CVS pharmacy, for example, and ask if their patients have said anything? When I left my last doctor after 2 1/2 years, I was SHOCKED to hear what the pharmacist next door had to say.

Since we are sort of in the same boat, in terms of being sick for a while, I also can suggest that you start developing a specific kind of faith, that has nothing to do with your religion of choice. When you are sick, you think there is nothing in the world you want more than to get well. Yet I find that when I do feel better, I have to go through a huge grieving process for lost time, and would almost rather be fighting a dramatic health battle than look at how much catching up I have to do.

I asked how long is Dr.M LLMD, how many patients did he treat, what is his success rate, any complains, any reviews from Medical board. Which LLMD treated him for his LD? Does he follow Dr. Burrascano quidlines? Does he belong to ILADS?

In 4 days I received the packed containing basic information a medical qustionaire. That put Dr.M back into my mind for consideration as my main LLMD.

Medicare covers office visits for LD, if it's at ID, neurologist, GP, internist, and may be others office. My secondary covers medications - I was only 6 weeks on IV, that was covered fully.

Dr.M doesn't take Medicare, so all office visits and procedures/blood draws will be my expense. There is no easy ground public transportation between Vail and Colo Springs (except Greyhound bus once a day), the flights are several times more expensive than to NY.

I just don't know what will be easier on me in the future. 11 years of LD took too much out of me, my patience is limited, and I don't want to make a major mistake.

I'll go to Hyde Park to check out Dr.H and I'll let him know about Dr.M in Colo. I'll ask who does Dr.H preffer for me to have localy. Or maybe I won't like Dr.H, who knows.

Thank you for the information.

Does anyone goes to Dr.H in Hyde Park,NY? Do you know of anybody, who went there.

I appreciate any help.
Petra

He tends to use combination treatments at mid-level strength: for example, biaxin and septra rather than rifampin or levaquin for bart, plaquenil rather than mepron for babesia. That doesn't mean he won't prescribe these treatments if you discuss them. But you would probably get to them as second- or third-line treatments.

He is also heavily influenced by certain alternative treatments, such as a Tibetan herbalist named Dr. Dhonden, heavy metal chelation, and Dr. Zhang. And he does have a certain take on lifestyle. Laid back people will definitely click with him best.

Also, you might want to call the Columbia University chronic Lyme center. They do a lot of work with longterm Lyme, because Dr. F is at Columbia. But their medical circle overlaps with ILADS, without being entirely focused on it.

If you are shopping around, please be aware that there are many variations on the ILADS viewpoint. ILADS doctors have a lot of interpretive leeway, they come from many different backgrounds, they are changing and evolving all the time. And there are also doctors outside ILADS who are sympathetic to the treatment style, but have to be ferreted out.

I had just a ID course of IV Rocephin (6 weeks), followed by oral Zithromax (4 weeks). I have no idea about pharmaceuticals to treat LD and mycoplasma (as my only co-infection). So far I tried alternative therapies, as my response to most meds is quite strange (mostly opposite or no effect, extremely tiny or huge doses of meds to get to therapeutic level, etc.)

So I really don't have any prefference on my llmd's choice of treatment, don't know how aggressive will my body handle it.

My biggest problem is neurological pain, including several migraines a day or migraine pain lasting several month (hospitalized for almost 3 month due to a migraine). Followed by CFS/FM, bone and join pain, swelling & stiffness, numbness of hands and feet,hypercoagulation, chest pain, breathing difficulties, neurological & psychological problems - otherwise I'm "fine".

quote:

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Originally posted by Punkie:

My biggest problem is neurological pain, including several migraines a day or migraine pain lasting several month (hospitalized for almost 3 month due to a migraine). Followed by CFS/FM, bone and join pain, swelling & stiffness, numbness of hands and feet,hypercoagulation, chest pain, breathing difficulties, neurological & psychological problems - otherwise I'm "fine".

---

Petra, this could easily be babesiosis and/or bart complicating the picture. You say mycoplasma is your only co-infection.

Many LLMD's have found that you cannot rely on testing for babs, just as the Lyme testing is flawed.

You'd be wise to ask to be TREATED for babs, no matter what. Not treating for existing babs will keep you from ever getting well, or beating Lyme.

I agree with the coinfection route...sounds that way to me...especially if you've treated wtih what you' have and still have as many problems as you do...you won't get better without treatign the coinfections, including babs...and that's NOT with iv's...

I think all of the above llmds are great ones and will serve you well...

pick one and stick with one..follow their advice to the t...jumping around will get you into trouble..believe in one and you'll be on the way to recovery..

I had the best - Bradford microscope test done by to pathologist in the word, so I don't need to guess what co-infections I have. It would be crazy to ask for treatment for a condition I don't have.

I got regular e-mails regarding different doctors on my list, which made my decision easier. I learned a lot about different ILADS interpretations.

Please keep in mind that they do not have a regular receptionist right now in their clinic. Their receptionist quit because she couldn't keep up with the high volume of work. Therefore, she may not have been able to answer all of your question.

quote:

---

Originally posted by Punkie:
I thank everyone for the opinion.

I had the best - Bradford microscope test done by to pathologist in the word, so I don't need to guess what co-infections I have. It would be crazy to ask for treatment for a condition I don't have.

---

I didn't say you'd be treating something you don't have. It's VERY possible you have babs. But if you don't want to consider that possibility, that's OK by me.

I'm no expert or dr. I've just been on this board for 4 1/2 yrs and have seen what happens when people rely on co-infections tests that are unreliable.

I'm glad you've found a dr you are comfortable with. Good luck.

stilll agree on the babs and that's why youre not getting any better...bone pain, breathing and migraines, all typical of babesia...

I"m not quite sure why you started your post with 'want the experienced lymers opinions' if you really don't????

best to you.

lisa

[This message has been edited by lla2 (edited 11 April 2005).]

I suggest faxing them. Yup faxing them , or calilng the office. Sometimes, they are a little bit hesitant to answer faxes due to LLMD issues that they all face.

But ask them questions such as:
How much does the appointment cost?
HOW OFTEN am I required to come back?
How much do SUBSEQUENT appointments cost?
Do you have an after hours telephone number?
Do you treat coinfections, EVEN IF the tests are negative ( I had the best bradford microscopy AND live cell analysis done, AND testing done, AND psychic readings done believe it or not)

and I STILL have bartonella,after every single one of them saying I dont.

However, I met the two Colo. docs just before they opened their practice (after I'd already started with Dr. C.)

I really liked them and if they'd been practicing when I got ill last year I would have definitely gone to see one or both of them.

One has LD and was cured w/ IV rocephin and the other watched him go from completely incapacitated and being told to prepare to die to almost full recovery with IV treatment.

They had great "energy" and have really done their homework before going into practice. They really want to help people with Lyme and have gone out of their way to learn as much as they can.

If I were you I'd consider them as a great option. Travelling to a distant state to see a LLMD is costly and time consuming. You have a great alternative right here in Colo. don't blow it off with out considering it.

Anyhow feel free to email me if you want too.

I found out they work great as a team and prefer it that way. What a luck.

They both also agree that I need the most help in treating of Mycoplasma. My body is being eaten alive by it.

I found some articles about Mycoplasma on this forum, I can rely to all the information. When I get more strenght after a long car trip to LLMD, I'll start a new topic about Mycoplasma, as I would like to learn more about the experience from other LD patients.