Need LLMD in Phoenix, AZ area

[tiredofbeingfatigued]

I am having a hard time finding a reputable, qualified LLMD in the Phoenix/Scottsdale area.  I have tried ILADS but did not have luck with the doctors they recommended.  One follows IDSA/CDC guidelines for diagnosis and avoids the "L" word like the plague. The other wants to charge $50,000 for treatment.  No kidding.  I would really appreciate it if someone could PM me with some names and contact info.  I could go a little outside my area for the right doctor.

[JackieCalifornia]

I just searched on google for

       ---   llmd phoenix az  ---

and got many hits to check out.

[tiredofbeingfatigued]

You say, “That does sound very strange!  I just searched online for -- arizona lyme disease doctors -- and got quite a few hits that sounded fairly ... normal.  Of course that can be misleading, but it may be that the 'normal' docs just don't post much to avoid getting hassled by other sort-of-LLMDs or the medical establishment.

The political/medical landscape in each state is different, and it may be that some reasonably normal Lyme docs are just pushed into silence by some other segment of the medical community.”  That is exactly what I have been led to believe.  They have to stay under the radar to protect their licenses.  Just as we have to protect them by not naming them on this forum.

When I got my latest reply from ILADS, they said, “Because of the large numbers of patients who ask for referrals, and the relatively few providers treating tick-borne illness, we limit the number of ILADS names we issue to each individual.”  I noticed that they only give 3 names at a time.  Two of them were naturopaths.  The third was Lyme Patient Advocacy which I emailed.  They responded asking for my full name, address, and phone number before they would give me a referral.  I did that and I am still waiting.

You say, “If you would be willing to share the part of AZ you are located in (like 'near Yuma'), maybe someone here would have some ideas.”  I live in Phoenix.  

[JackieCalifornia]

That does sound very strange!  I just searched online for -- arizona lyme disease doctors -- and got quite a few hits that sounded fairly ... normal.  Of course that can be misleading, but it may be that the 'normal' docs just don't post much to avoid getting hassled by other sort-of-LLMDs or the medical establishment.

The political/medical landscape in each state is different, and it may be that some reasonably normal Lyme docs are just pushed into silence by some other segment of the medical community.  Dunno.  

In any event, I would in your situation continue to look for a Lyme doc you are comfortable with.  And it may be that the slightly fringe Lyme docs just do more advertising than the more regular-type Lyme docs.  If AZ is a state where there is lots of leeway in how docs treat, the fringe docs may seem more numerous because they don't have to sneak around.  

You might try ILADS referral sources again, and just keep asking until you find a doc you are comfortable with.  I am guessing that the ILADS registry of member MDs does not characterize them as to their diagnostic and treatment approaches, so you may just have gotten a skewed sample.

By all means, find a Lyme specialist you are comfortable with.  I would keep searching just as you are doing now.  If you would be willing to share the part of AZ you are located in (like 'near Yuma'), maybe someone here would have some ideas.  Don't give up!  

[tiredofbeingfatigued]

I contacted ILADS a few months ago.  The names they gave me included the MD I had already seen who seems to adhere to IDSA guidelines and the LLMD who told me she charges $50,000 for treatment.  I contacted them again this week and I just got a response.  All of the referrals are for ND's who use only alternative treatment with no antibiotics.  When I had a conversation with one of them yesterday he acknowledged it sounded like Lyme but didn't talk about addressing Lyme directly.  Their philosophy is to determine imbalances and treat those and strengthen the immune system.  I can see scenarios where this would be worthwhile.  With Lyme, I am not so sure.  When I check out the others on their websites it's clear this is what they do as well.  I guess the principle is that if you correct the underlying imbalances they body will heal itself from chronic disease, including Lyme.

I also got a response from the TBDA and those doctors all fell into the same category as the above.  That is, except for the same MD I mentioned above and in my posts under Possible Lyme????

I just seem to be going around in circles with trying to find a doctor who will at least incorporate antibiotics in the protocol.

[JackieCalifornia]

I had Lyme and babesiosis.  These infections need different meds, and the doc first treated 'babs' until it was gone, and then switched meds to wipe out the Lyme.  If you haven't already, you can go to the ILADS website and ask for names of docs near you.  

[tiredofbeingfatigued]

That makes sense.  Did your doctor use a series of different antibiotics or the same one for those 4 months?  How long before you started to feel better?

I talked to a friend of mine who has been a pharmacist at a hospital for many years.  He said Ceftriaxone is an effective antibiotic.  I think that is the same as Rocephin.

How did your doctor know when or if the spirochetes turned into the cystic form?

I got a list of doctors from the Lyme support group.  It looks like most of them have the title DO, DC, or NMD and even one DPM.  Looks like most of them are into alternative treatment.  There is one MD who came from Pennsylvania.  I might call his office tomorrow.

[JackieCalifornia]

There are docs who use 'alternative' approaches to antibiotics, but I have not done any deep reading on the topic.  My Lyme doc was an all-antibiotics kind of doc, and it worked very very well for me and a family member who also had Lyme and babesiosis, as I did too.

Some people like 'alternative medicine' approaches, but when dealing with bacteria that are susceptible to antibiotics, I would go for the antibiotics ... because they are known to work.  If I got Lyme again, I would use the same treatment approach again, without hesitation.  Lyme is a bacterial organism and responds to antibiotics.  

My view is, "Why use other approaches, when the antibiotics are known to work just fine?"  My treatment was about 4 months long, and that was about 5 years ago.  I remain healthy and well since then.  

Lyme is bacterial, and in the same family as syphilis.  Syphilitic dementia was not something I wanted to risk, so I went for the antibiotics and have no regrets at all.

Others here may have different views.

[tiredofbeingfatigued]

I just talked to a doctor who is an MD, MPH.  I called his office and asked the receptionist questions,  She had the doctor call me back for a 5 minute Q&A.  He said it is certainly a possibility that I have Lyme. He says he has a lot of experience treating Lyme but he does not use antibiotics.  He only uses alternative treatments aimed at strengthening the immune system and dealing with any other underlying issues.  He mentioned a treatment called UVLRX which is a new light treatment therapy that kills infections in the blood.  You can check it out at ntelixmedical.com/uvlrx.  
He also mentioned that I may have mold.

The cost for the initial office consultation is $290.  Does that sound reasonable?

Do I need an antibiotic treatment or are these alternative treatments effective?

Any thoughts?

I am so confused.  

[JackieCalifornia]

You make perfect sense.  It's LymeWorld that is squirrely.  Keep repeating that under your breath.  Makes a good mantra.

I just searched online for     -- lyme disease arizona doctors --    and got some interesting links.  

I also searched 'Arizona Lyme' on this MedHelp site, and got about 100 posts, some of which might be useful.

You're right that our protection of Lyme docs makes it harder to find the docs, but posting on one of those threads with a title like 'Need LLMD near Tucson' or wherever you are may get some response.  [The 'cone of silence' (wasn't that in the old 'Get Smart' TV comedy?) is useful, but not impenetrable.]  

One approach on this MedHelp Lyme site is to post 'Need LLMD near [Baltimore MD]' and when someone responds, suggest that you move the conversation to private messages ('PMs') on this site.  That keeps all the identifiable information out of the public eye.  If you need help figuring out how to do an PM, let us know -- it's not as hard as it sounds, but also not obvious at first.

It takes a little snooping around to find out what patients think of their Lyme docs, but not much.  I found quite a bit online about the LLMD I ended up going to, but in California, discussion about Lyme is more open than in some states, and he is pretty well known in the field.  Even in the more secretive states, there are subterranean ways to find out about docs, and over time, we have encouraged people posting here to keep ALL identifiable information about Lyme docs contained in private messages, just to avoid confusing which states are more flexible with those that are not.

I know a dose of 'Lyme brain' makes this sound overwhelming, but once in the habit of shielding the docs, it's pretty straightforward.  Let us know if you need details on all this maneuvering.

[tiredofbeingfatigued]

I previously did a search for Lyme docs in the area.  The ones that I found are also some who charge so much and/or don't have a good reputation for success.  I have a feeling the really good ones are not going to be so easily found.  They may stay more under the radar to avoid trouble from the naysayers.  

I am still waiting on a response from ILADS and TBDA.  Maybe I will have some luck with that.  I can also try the sources on the website that mojogal recommended.  After I get the names, any suggestions for determining who might be good?  I guess I could try searching online patient reviews for the docs and see if I get anything.  But there probably won't be anything reviews about experience with Lyme treatment since we have to be so careful to protect the docs.  Hopefully, that makes sense.  I think I have Lyme brain.

Thanks.

[tiredofbeingfatigued]

Thanks for that website.  I had already contacted ILADS and TBDA which it lists as sources for referrals.  I don't have FB so I can't use that one but I can contact the other resources.  Looks like an informative site.  Thanks again.  I really appreciate it.

[mojogal]

Whatislyme.com has referrals and other interesting things.

[JackieCalifornia]

and PS have you tried -- azlyme  [dot]  org -- for a referral?  I don't know anything else about them but their name, but can't hurt to try.  

I found the link to them by doing a simple search for -- arizona lyme -- and found a bunch of other links.

[JackieCalifornia]

I hear you.

I just searched on google for

             --- arizona lyme ---

and got quite a few interesting links.  Among all those hits online, there are bound to be some good Lyme docs.  It's good that you are keeping your guard up about these docs who charge too much and/or don't seem to know what they are doing.

If you can find an Arizona-based, patient-oriented website like this one we are both on now, that could be quite useful too.  

You could, if you have not already done this, start a new thread and title it something like "Need LLMD within an hour's drive from Phoenix AZ" and ask that anyone with suggestions contact you by private message through this site.  That protects everyone's confidentiality while sharing important information about finding a good Lyme doc.

It sounds like a lot of work, but might not be so bad.  And the good news is:  getting rid of Lyme!  Keep us posted.