I have met 4 families who have been 'fired' by dr.B for questioning his methods, or seeing another doctor, even missing an appointment. My brother's wife said they love drB, and they can't believe he is taking advantage of a dying man on purpose, but's it's hard not to think that.

nothing my brother has done in the past year has had any effect on his health. Since the option is ALS and death, they choose to believe dr.B, but it is so hard. Any responses? thanks
 

If I were your brother and his wife, I'd find a new lyme doc ASAP.

My philosophy is if I'm not happy with the doc I'll find another and keep searching.

I'm not familiar with doc B. but I assume he's a lyme doc right? Their are other docs and it sounds like your brother is really bad especially if lyme isn't being addressed.

There's a doc 1 hour from where I live who is a new lyme doc and he was also diagnosed with ALS...same situation as your brother. He's been doing IV rocephin for over a year and doing well.

Take care!
 

What abx does your brother take?
 

Email me too please.

Beth
 

We had a man diagnosed in our lyme group with ALS and they later found out it lyme. He died later that year. We want your brother to get help NOW.

Please get him an IV fast.
 

[This message has been edited by MammaLyme (edited 22 April 2005).]
 

nothing my brother has done in the past year has had any effect on his health. Since the option is ALS and death, they choose to believe dr.B, but it is so hard. Any responses? thanks[/QUOTE]

I see a Dr. B and I realize I've gotten worse in some ways during treatment, but I also know that if I never saw him, when I did, I wouldn't be here today, or at best on a feeding tube and trache. I know that sounds harsh, but that's what I experienced. I also know you can get worse, before you get better; I know first hand how family, and non-lyme literate people don't understand this, yet it seems similar to what cancer pts. go through while dosed up on chemo.

I've had IV and I continue with IM weekly, along with many orals; Every muscle from head to toe is weaker, but I can swallow and breathe, pretty important, which I had trouble with 8 mos. ago, before Dr.B

Nothing worth it is easy, and unfortunately, with ALS/Lyme we don't have many choices, but to fight the good fight, and never give up hope. People dxd with ALS, that have Lyme can get better, we've seen it, but it takes a long time.

Winston Churchill - When you're going through hell, just keep on going...

PS - MammaLyme, I was the one that testified at the hearing 3/10, actually my brother spoke for me. You saw me at my worst, but maybe you'll hear me at one of the next hearings & not my brother!

Take Care to ALL!

 

If he tested positive to lyme, then he definetely has Lyme or at least had lyme.... I'm not saying he doesn't have the ALS too... I dont know I am NOT a dr.

BUT If you are not happy with the results of your dr I would get a new one.

My personal opinion would be that if I went to a dr. who was treating me for lyme for a year and I made no improvement in that time... I personally would get a knew dr. because lyme can be treated and one can recover from it.

I do NOT have expereince with Dr. B..... but in my expereince with other drs. I can tell you that every dr. that claims to be a llmd is not a llmd.

In my experience a good llmd...

--will change treatment when one treatment is not getting results
--- is open to listening to symptoms and past expereinces with treatments to see what worked and what didn't.

This is just my opinion. in the end he has to do what he feels is best for him.

Best Wishes abd I hope everything works out no matter what he decides to do
 

He has been to other llmd doctors and he tests negative for lyme. They also tell him it's ALS. Only drB says you don't have ALS, you will get better. It's hard to resist that.

I don't know anything about this dr....but if it's the one I think it is, I thought he had a very good reputation in the Lyme community.

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oops!
Lymetutu

 

However, there are late stage cases that get the best treatments available, and still are not "cured" and some even die. This is a very serious disease.

Those who advise getting another doc need to remember that they are pretty scarce. And all of them live in fear of persecution.

Some other docs who have treated with IV are now using bicillin shots and it works well. Don't know how the costs compare, but am guessing that IV is much more expensive. So, this might be worth a try.

I am always leary of people who are second guessing treatments. Have heard this doc speak and think people should back off on the criticism. Several of the patients who were fired had done things that understandably were a problem for a doc who is completely overwhelmed with patients, being persecuted for treating us, and has good reasons for his actions, even if patients aren't able to picture a completely outrageous medical establishment position that harms so many patients. And how it affects lyme docs.

Yes, patients should switch if they want to. But not every patient complaint is valid and they are frequently not clued in to the whole picture.
 

Second, I can tell you that I've had some terrifying experiences with Lyme doctors. Until recently, the available Lyme treatments were a lot more primitive than they are now, so patients had far more expectation it would take years and years to get better; and also, patients had less contact with each other, and had to be more trusting of whichever LLMD they could find near them.

So you are not paranoid to suspect that Lyme doctors have had the opportunity, if not necessarily the inclination, to play fast and loose with treatment. Also, there are LLMDs from wildly different backgrounds, medically and culturally, and they will have varying takes on which treatments they feel comfortable prescribing.

For example, some doctors have a more "natural/herbal" philosophy and don't want to prescribe these mega-doses of antibiotics. I've also heard lots of fuzzy gobbledygook about how women's emotions unsettle their immune systems. You would be amazed how my emotions settled down when I started taking the right antibiotics.

And as there are very few doctors doing this kind of work, there isn't enough competition to force the same standards or peer oversight that you would find in other medical sectors. We just can't control that right now.

So you get a lot of these stories of people who credit LLMDs with saving their lives--which is 100% true--and also reaching a certain recovery point and then staying there for years. You also find people accepting that they have to live with certain disabilities, when it may no longer be the case.

And you meet LLMDs who started out with heroic intentions, and have grown to hate their jobs, or to be numbed out, or who cling to obsolete treatments that once made them stars in their profession. Or who mean well, but who are only moderately skilled, and are dealing with an illness that requires real brilliance and creative thinking, and that is way over their heads. It's a tough job.

I've had two noteworthy LLMD experiences. In one case, I learned my doctor of 1 1/2 years had lied to my insurance company. The whole time I was with him, I was on partial medication. I would not have died, but I would have remained disabled. Meanwhile, he was taking my insurance company for thousands of dollars. No wonder they don't like Lyme doctors.

Alas, when I left him, I was so sick and desperate that I grabbed the first--and only--doctor who would take my insurance. After 2 1/2 years with him, I just found out he had been giving me the best Lyme antibiotics in the world, but had been holding out on treating certain co-infections, which rendered the Lyme medicine useless. When I started asking for those co-infection treatments, he was furious, and there was a race to find a replacement before he overcame his fear of being sued and threw me out.

So I was disabled for almost five years for no reason. Believe me, I still can't believe it, that someone would just ruin my life like that. I think, if only I'd been more enthusiastic about my career hopes, if only I'd joined the doctor's religion, if only I'd dressed more like his other patients, if only I'd been more timid, more assertive, more friendly, more distant, looked wealthier, more poverty stricken, maybe then my doctor would have treated me for babesia/malaria, my main co-infection. But come on. Get real. I was a cash-cow.

A month ago, I found a doctor in my city. Although we have just started working together, I have already noticed certain traits which hopefully bode well:

1. He teaches at a nearby university, and works at a prominent hospital, so his reputation is transparent.
2. He treats other diseases besides Lyme, so his livelihood is not dependent on chronic cases.
3. His waiting room was filled with high-powered professional types, whose time is worth money.
4. When we discussed my case, he kept saying, "I need to see the cause and effect here."
5. He said that to prove I wasn't making this whole thing up, I had to demonstrate that I was trying to find a new job and cautiously starting to exercise again (instead of telling me I should be grateful to be disabled).
6. Since it was both a Christian and Jewish holiday, he told me to have a great holiday no matter what my background.
7. Although he doesn't take insurance, his fee is based on the amount of time he spends with you, and is considerably lower than the LLMD average. After hearing my story, and seeing that I was a wreck, he knocked his fee down, in the hope I can pay up when I get a job.
8. He wrote prescriptions for several months in advance, so that I would not feel this panic that every month my doctor could cut off my lifesaving drugs if I questioned him.

No matter which doctor you see, though, it's important to remember that it is unrealistic to want an all-knowing healer, who will magically provide the right antibiotics. You have to do your research in advance, call in advance to ask which antibiotics a doctor works with, and then ask for the ones you want immediately.

If your brother has Lyme, whether he has ALS or not, he may want to treat for the co-infections, since they block the action of Lyme antibiotics, and also try the stronger antibiotic combinations. Read up on bicillin, minocycline, omnicef, rocephin, ketek, zithromax, flagyl, tinidazole, rifampin, levaquin. Some people (though not me) also like biaxin, plaquenil, vancomycin, tetracycline, ceftin, and doxycycline. And you MUST treat for systemic yeast infection, which suppresses the immune system and causes its own severe symptoms.

By the way, I saw my new doctor 25 days ago, and had symptoms of Lyme encephalitis. I'm already seen strong improvement on the following medications, and at this pace, could probably hold down a full-time job in another month. However, please be aware that 1) I'm a total stranger, and you should check with other people for their experiences, 2) I built up tolerance to these antibiotics individually before combining them. This combination might be too strong for many people, and is only included as a starting point for your research:

Lyme: omnicef, ketek, low dose flagyl pulsed in 5 days a week.
Babesia/malaria: artemisinin, ketek, mepron 10ml/2x day

I also had good results from minocycline, but the side effects were too extreme to keep taking it.
 

He, and several other well known Lyme doctors, addressed the issue of Lyme and ALS. He said that, unfortunately, even when the patient clearly tested positive for Lyme, antibiotic treatment was not always successful when patients showed these symptoms.

I think everyone has given advice that may or may not be useful in this particular case. More aggressive treatment, or another doctor, may help. But this is a very serious illness, and even if it responds, it will take quite a long time to treat.

I doubt that the doctor is taking advantage of your brother. It would be hard to withhold a treatment that has a possibility of helping, because it is not guaranteed. I'm terribly sorry for what your family is going through, and sincerely hope that things turn around.

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Sonoma County Lyme Support
[email protected]