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Met with my LLMD yesterday

Hello,

I had an appointment with my LLMD yesterday. I had scheduled it because when I increased my doxy dosage, my heart started doing funny things so I had to decrease the dosage.

First, after waiting 3 hours to get in, it was too late for them to do the IgeneX testing for my husband because there were no more FedEx pick ups that day. So I'm really annoyed about that. They KNEW that I was coming up to get him tested and he had taken a vacation day off from work.

And they wouldn't even look at my husband until the stupid IgeneX test comes back.  So now he has to go next week to get it done and wait 3 weeks to get it back so we are looking at another month until he starts treatment.

Then I tell my doc that the 300 mg doxy was bothering my heart and that I feel like I have plateaued on the 200 mg because I haven't had any lessening of symptoms in months.

So then he goes, "ok we are going to switch to Bartonella treatment".  I'm like what???!! I sort of flipped out. Oops.  I asked him to explain to me how and what symptoms I was displaying that led him to believe Bartonella. And he couldn't say anything!

I continued to explain to him that I'm having almost every symptom of Babesia and I had a big herx when I had taken Babesia herbs. And then he says "yeah when you first came in here you definitely had all Babesia symptoms but you don't have night sweats".  

Since when did not having ONE symptom on the list qualify as NOT having that co-infection?

I had printed out a list of symptoms of each co-infection and highlighted what symptoms I had been having.  I highlighted almost every single one under Babesia and Ehrlichia, absolutely nothing under Bartonella. He didn't even care!

And hey, maybe Bart will show it's ugly face at some time during treatment but so far, nothing, so I don't understand how he could justify that I have Bart.

So long story short, I told him I want off the doxy and he switched me to Ceftin and Zithromax I believe. Have you guys heard of those and are they good? I don't know the exact dosages but I know they are high like 1000 mg a day.

And yes, I am calling around to new LLMD's because this guy is a joke. Also, I know a lot of people that go to him and it seems like no one ever improves! Which is very scary.
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Avatar universal
"Charges about $900 per 30 minutes."  That's why I am to a certain extent, my own Dr.  And that's just the first of many reasons.
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Avatar universal
Welcome (or welcome back) --

People stop posting for any reason or none -- you can send someone here a private message by hovering your cursor over their screen name (such as "Elleon_arual") and then click on 'send a message'.  That will send a private message to the person in question, and if this site is still forwarding email notifications to them (and the person is still receiving them, or may have changed email addresses, or whtaever), they will get your message and may respond.

--- You say, "I am on a search to find a very good llmd myself."  You can post here asking for recommendations to an LLMD near [whatever area you live in, like Pensacola, in your case, or expand it to areas you can get to, such as 'Mobile to Pensacola' or however far you can drive).  

Or you can search online for  -- florida LLMD -- and include various cities to narrow the search, .... or you can look at websites such as -- LLMD florida panhandle -- and so on.  

Also look for affinity groups such as the Florida Lyme Disease Association, which may have a list of Lyme specialists in Florida.  I just searched on google for -- florida lyme disease association -- and got hits for several different Lyme organizations in Florida, with variations on the name.

--- You say, "I hope someone told Elleon_arual that probiotics (acidophilus) are very important to take when on antibiotics especially and help prevent yeast growth when taken in high enough doses."

Check with your doc about potential conflict between antibiotics and acidophilus.  To my understanding, antibiotics will kill acidophilus if taken too close together in time, because acidophilus itself is a bacterium.  Some docs recommend other probiotics that are *not* killed by antibiotics, such as Florastor (generic: S.boulardii).  Best to check with the doc or pharmacist before proceeding.
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Avatar universal
Why did this thread abruptly stop? Does anyone know what has happened to the original poster on this thread? Hopefully she is doing better now.  I am on a search to find a very good llmd myself. I hope someone told Elleon_arual that probiotics (acidophilus) are very important to take when on antibiotics especially and help prevent yeast growth when taken in high enough doses. I take probiotics twice daily even though I am not on antibiotics yet.  It just helps keep the bad bacteria in check, as well as yeast.  And with Lyme disease, our bodies need all the help we can get!  I would love to see an update to this thread.
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Avatar universal
Does anyone know something I can take to combat yeast?

I am worried about that with the new higher doses of these meds.

Even the pharmacist said I need to be careful.

I already cut out sweets and any kind of breads/pastas a long time ago.
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Avatar universal
It's okay!

I am going to start the new meds tomorrow (Ceftin and the zithro) so I'll let you guys know how it goes.

I'm super nervous.
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Avatar universal
sorry for the previous post! just figured i try to help you relax.  breaking the zithro i think would be a good idea because taking a whole one may make you feel like crap. alot of people need to work up the dose a little to get used to it.

good luck and positive thoughts.
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Avatar universal
Okay back ON topic here.

My LLMD called yesterday. He said to break the Zithromax pills in half for a week or two or however long I feel comfortable and see how I react to them.  If I am doing good, then go to the full pill.

So I guess that is what I'm going to do.

On a side note, I feel like I am suffocating from the inside out.
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Avatar universal
sorry to get off topic but.. one thing to consider like some people said. if you move to florida, it is more difficult to find a reliable llmd.  

i would not want to move down there, find an llmd who is not capable of taking care of my issues and having to drive long hours to get help each time.

i know new york has some good llmds, one of the best in the country mister h  is only 25 minutes from me, as well as a couple others too.   the scare of getting re-bit is scary, but i would rather deal with that scare, enjoy life with my family and friends, and be around reliable llmds

then to leave my life and be alone in florida. (yea its beautiful :) ) but just something to consider!
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Avatar universal
Thanks for the reply.

My LLMD just seems to think my air hunger is related to my heart problems...like being out of breath climbing stairs.  But I know it's not because I'll be laying in bed and not be able to breathe and my heart is beating fine. And it's really bad right before bed and right when I wake up not all day like my racing heart.

I am waiting for a call back from the doc with the fancy website.  I am just nervous because his website shows a lot of pics with people sitting with IV antibiotics. I really really really REALLY don't ever want to do IV antibiotics. I am too scared of them. So I am hoping that is not this doc's solution for everyone though. That will be my last option if oral antibiotics cannot help.

My husband and I just picked up a Magnesium Aspartate. Our naturopath recommended it for heart palps. I've only been taking 1 a day though so I will increase it and see how it works. I don't remember the mg of it though. It has definitely cut down my muscle twitches though! Although I do believe they are hard tablets, not capsules.

I am VERY tempted to go to the ER with this, just to see what they would do and if they would treat me for Babesia. I have a bad feeling they would do nothing since I went there with severe pressure in my head and barely able to walk because of dizziness when I first got sick and all they did was an EKG and sent me on my way.

I told my LLMD that we had my husband at the ER last weekend for heart palps and air hunger and look, he's not even treating him for Lyme let alone Babs.

I feel so totally helpless. We have always been extremely healthy people and not being able to control that really bothers me.  Now we are at the mercy of someone else to help us and I can't find anyone to do that.  

I had e-mailed the PA Lyme group and somehow this volunteer in Georgia got my number and talked to me for an hour about her experience with Lyme. She had a great LLMD, put her on multiple antibiotics to target all forms of the Lyme and supplements to help.  

Her doc said she was probably one of the sickest patients she has ever seen and she said she has been off antibiotics for 3 years now and feels great. I need to find an LLMD like that, right down to business, no messing around. I am young and strong and feel like I can handle the antibiotics to really get at this thing.
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Avatar universal
Why don't you ask your current doc straight out why he's not treating you for Babesia?  That question deserves an answer.

Just the fact that he thinks IGeneX is unreliable is a big problem.  That's the IDSA propaganda. In reality, IGeneX does more advanced testing and finds more cases than "standard" labs.  The IDSA and CDC bad mouth IGeneX because they don't want to explain all the people who test positive there who were negative at other labs. It would require them to admit they're wrong about "standard" testing, which they seem loathe to do.

It seems your doc is in the awkward no man's land in between the IDSA and ILADS positions, willing to treat Lyme longer than 30 days, but stumbling around in the dark on everything else.

If the guy with the glitzy website takes your insurance and seems better than the one you have now, I personally would make the switch. Cost is a big issue for Lyme treatment, and you have to do what it takes to get better.  Sometimes, we have to choose the lesser of two less-than-perfect choices in order to move forwards.

You want to make sure you don't get any worse.  Lyme and Babesia can be debilitating.  Sometimes it feels like you're getting worse with treatment. It isn't uncommon for Babesia to get worse as you treat Lyme.  It sounds like you might already be experiencing this. Be prepared to feel worse for a while once you start treating Babs.  Not everybody does, but it's not uncommon.

If you're really struggling to breathe, go to the ER. Tell them about your Lyme Disease and that you think you might have Babesia. They should test you.  They may also give you a breathing treatment or oxygen, which can help settle down the stressed breathing.  As a side benefit, the ER visit will put your doctor on alert that the air hunger is really a problem.  It's amazing how much more quickly people believed me about the air hunger after I told them I'd already been to the ER for it.

From what I've read, about half of Babesia patients do test positive. I'm not sure why your doc hasn't ordered testing for you.  Yet another red flag on this doc.

P.S. I've had the awful air hunger.  Magnesium supplements really do help, but not Magnesium Oxide or Magnesium Taurate.  Those two types just don't help the breathing.  

Citrate, Orotate, Malate, and Aspartate all seem to help.  I finally found a possible explanation: a study showed that oral Magnesium hydrates red blood cells, improving their oxygen transfer.  Epsom salt baths help my body relax and my heart rate to improve, but it's the oral supps that ease my stressed out breathing.  I take a 200mg capsule 3 times a day to keep my blood levels steady. (Capsules seem to absorb better than the hard tablets.)  I feel it if I miss a dose.
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Avatar universal
I see you are from the Tampa area. We are thinking about moving to Palm Harbor.  

My husband probably has a year at his job left so we are hoping to get this under control before we move.
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Avatar universal
Well I'm STILL waiting for my LLMD to call me back from last week about the Zithromax since I'm having heart problems.

I called 2 more LLMD's...all want $850 for first appointment, per person, not including co-infection testing. Then $350 follow ups. We cannot afford that.

I called one in Harleysville, PA, he is $325 for first appointment which isn't bad but he wasn't on the list of LLMD's that the Lyme group gave me so I'm nervous.  I don't think I can post names on here so I won't.

I am always worried these places with fancy websites are sort of Lyme factories....just pumping antibiotics into people and not addressing other health concerns to help them along.
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Avatar universal
The description of 'early' or 'late' Lyme is used by many doctors and is in many articles. So the repetition of that is no surprise.

But there is absolutely no certainty about when one or the other occurs----- unless it's when you  have a bulls-eye rash with a tick attached then it's 'early' (That was hyperbole but not too much.)

To answer your question---- Ceftin is used no matter what the purported stage of a persons Lyme disease progression.

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Avatar universal
So is it basically useless to take the Ceftin since I've had Lyme since June?

I am allergic to amoxicillin and trying to stay away from anything that will make me be sun sensitive since I am going on a cruise in a couple months.
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Avatar universal
I don't know who to respond to first as I am having trouble comprehending things.

I don't know if it's a herx or what but it's been going on a few days and I feel really bad. I feel like I'm dying.

I have only ever taken doxy... I have to say although some say it can treat Babs some, I don't believe it.  It hasn't touched my Babs symptoms, in fact, I feel like they have only gotten worse.

I e-mailed a Lyme group in PA and they gave me the name of some more LLMD's within a reasonable driving distance of me. I am going to call them today and see how much they charge.

I never got IgeneX testing for co-infections. My doc doesn't do that because they are unreliable I guess. All along my doc said I've shown symptoms of Babs and Ehrlichia. My naturopath also picked up those two in me without me mentioning that they were the ones me and my LLMD were suspecting.

I don't know why he won't treat.

I am having significant air hunger right before bed and right when I wake up.  It seems weird but I really believe the Babs is killing me. Ever since I increased the doxy and my Babs symptoms really started to flare. Then I had to decrease it cause of heart problems and I feel awful since.

I have no idea what to do. My LLMD stinks. I don't know who to turn to. We have no money for any other doc.  I'm only 27 and I just want this all to be over with.

I am not too concerned about LLMD's in Florida since I have no idea when we will actually be moving.
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Avatar universal
I think I know precisely which one you are talking about. I concur with you about having to be very very careful. One needs to do a lot of research before making a final decision.

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Avatar universal
Florida has at least one doctor who should not be seen for Lyme disease. Be very very careful.
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Well, I can tell you about my experience with finding LLMD in Florida as I am in Florida.

Please read my earlier post as I don't want to re-post it.

There are two LLMD's in Central - South Florida. One is in Naples and charges about $900 per 30 minutes. Another one, I'll call him doctor C, takes upper tier PPO BCBS of Florida insurance and also charges $850 per first visit (before labs). Their office is VERY arrogant and VERY Snotty.

No other choices exist in this geographic area.

Get your Dx before you move down to FL - you will see a lot of unqualified Docs. They are here to make money, not treat - too many old retires on Medcare they can milk.
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Avatar universal
He is right about Doxy - it has been known to treat Babesia, but it is not a first choice of drugs though
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Avatar universal
Babesia must be treated with Anti-malarial drugs. If you were diagnosed with Babesia, you might likely be prescribed Clindomycin or Sulfonamides, or Doxycycline, depending on what the doc says.

I took 7 days of Clindomycin and it gave me nasty abdominal ache even though I took tons of pro-biotics along with it.

Did you get a positive Igenex result for Babesia?
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Avatar universal
Cefuroxime (Ceftin) axetil is used for the treatment of early Lyme disease manifested as erythema migrans. The Infectious Diseases Society of America (IDSA), American Academy of Pediatrics (AAP), and other clinicians recommend oral doxycycline, oral amoxicillin, or oral Cefuroxime (Ceftin) axetil as first-line therapy for the treatment of early Lyme disease associated with erythema migrans, in the absence of specific neurologic involvement or advanced atrioventricular (AV) heart block.
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Avatar universal
I found the page I was speaking of. These are notes taken by The Better Health Guy at a Klinghardt conference. Disclaimer: It's not a scientific study. It's estimates from someone experienced in hypercoagulation issues, David Berg.  

He estimated effectiveness of various natural agents for hypercoagulation at:

50% - Bromelain
60% - Wobenzym
70% - Serrapeptase
80% - Nattokinase
95% - Lumbrokinase

- See more at: http://www.betterhealthguy.com/klinghardt-conference-lyme-and-other-chronic-infections#sthash.LmR4gUD4.dpuf

There are plenty of other more scientific documents about how these enzymes help keep the blood from thickening.  Many of the references are about heart patients, but there are also discussions about how it helps make pathogens more visible to the immune system.


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Avatar universal
Wow. Your experience after eating the pineapple sounds just like my reactions to taking Boluoke. My stomach would get really bloated and my spleen would swell up.  There were days I looked 6 months pregnant.

My doc explained that the swollen feeling on the left of something pushing up against the inside of my ribs was my spleen.  I had that reaction with Boluoke for about 3-4 months, although steadily decreasing.

A swollen spleen with Babesia isn't a great thing.  It means it's working hard to filter out the parasites, which is good, but you don't want it to get overstressed. You certainly don't want any kind of impact on your torso as a swollen spleen is more fragile. You might want to consider taking something for spleen support.  I took Ailgeno for many months and I could tell it helped.
I highly recommend it.

Note: If you get any unexplained significant pain anywhere in the abdomen, go to the ER immediately.  Spleen rupture with Babesia is very rare, but it can happen. (Not to scare you, but a ruptured spleen is fatal without immediate surgery.)

The bromelain in the pineapple helps thin the blood. I will try to find that list of fibrin-dissolvers that I read recently.  Bromelain was only about 50% effective. Lumbrokinase was 95% effective.  With your reaction to Bromelain, maybe you should just take that for a while, at least until the reaction decreases. Then you could move up to something more powerful.

On a side note: it's inexcusable that your LLMD had no notes in your file that they'd sent you to the ER for heart problems. That's inexcusable!  It seems that incompetent doctors seems to have incompetent staff, too. The staff should have put those notes in your file since they took your call.
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Avatar universal
Yes, I'm excited about Florida.  If you know any LLMD's in that area to private message me about, I would appreciate it.  
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