This is topic Very angry and upset..long post. about LLMD in forum Medical Questions at LymeNet Flash.


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Posted by kitkat32 (Member # 9682) on :
 
Good morning everyone,

What a rough night I have had. I thought I would try to get some feedback since I feel like I am on the edge of a breakdown.

I have been seeing same LLMD for 2 years. I have pretty much been happy with him until lately.

My original bloodwork for Igenex 2 years ago showed IND IGG on Western blot. Positive IGG on Bartonella. I have gone many different combos of abx including Rocephin.

I had a few months of wellness here and there. Especially while taking Rocephin..until I stopped and also while on Zithromax.

My symptoms have come back pretty hard these last few months. I started my new combo of Biaxin/plaquenil almost a month ago.

In the meantime my LLMD had labs sent to Stoney Brook..I know...not that great of a lab.

I spoke to him yesterday about how awful I am feeling. Extreme fatigue, dizziness, feeling out of it, eye twitches, right ear pain and headaches.

My symptom that is most worrisome to me right now is the return of air hunger. Happens for no reason most of the time. It has started to happen though when I walk up steps too.

Through the years I have had many cardiac work ups. All with negative results.

When I spoke to my LLMD he said "do you think it's bad enough that you need to goto a pulmonologist?"
I said I didn't think so.

I asked if all my symptoms could be a herx. He said he didn't know. I asked about my recent lab works and what bands I had show up. He said I was IND on western blot IGG because band 30 was positive. He didn't tell me about any other bands being IND or not.

The he said my bartonella was positive on the IGG. He didn't feel those tests are accurate though. I don't believe he believes in co-infections.

I then asked if he thought we are still dealing with lyme or if we are barking up the wrong tree..he said...I DON'T KNOW.

I am so upset at this point. I look to my LLMD for support and I am not getting it.

Now I am really worried. If he doesn't think all my problems are lyme I have wasted all this time and money treating it. Also, what is it then?

My good friend who also come here and I chatted last night. She has also seen this doctor and feels too that he does not believe in co infections. She really helped cheer me up but I am right back to worrying now.

What does everyone think of this? I should also add that all my other blood work came back fine. Including things like SED rate and ANA.

I am so frustrated, mad and worried.

kit
 

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Posted by keltyl (Member # 14050) on :
 
I know it's easier said than done, but my thought is that you should change docs. Doesn't sound like he's really on the top of things.
 

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Posted by tailz (Member # 10014) on :
 
Who are you seeing in PA? Dr. S in Chadds Ford? Dr. F in Kennett Square?
 

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Posted by sixgoofykids (Member # 11141) on :
 
My air hunger comes from babs. I tested negative for babs, but my LLMD treats me for it and I see improvement from the meds almost immediately.

Whenever I say air hunger, he tells me babs.

Sounds to me like you need to be treated for coinfections. If you have to switch LLMD's for that, they I'd switch.
 

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Posted by seibertneurolyme (Member # 6416) on :
 
It is possible the air hunger is from Bartonella -- definitely all the other symptoms could be Bartonella.

Hate to say it, but if the doc won't treat Bart with a positive test then it is time to move on.

Bea Seibert
 

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Posted by Michelle M (Member # 7200) on :
 
Have you sent a sample to Fry Labs? Would he support your doing that? (For bart PLUS babesia?)

Michelle
 

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Posted by Lymetoo (Member # 743) on :
 
If he doesn't believe in coinfections, then I doubt you can get well with him.

Time to move on??
 

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Posted by cantgiveupyet (Member # 8165) on :
 
I feel for you, sounds similar to my first LLMD. I find if you dont respond to their treatment some of them just give up, and toss you aside.

Can you get copies of the recent lab work?

Also, how difficult would it be to get a 2nd opinion.

If this is Dr S in CF, PA, he doesnt believe in coinfections, told me so on first visit after he tossed me out.
 

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Posted by ByronSBell 2007 (Member # 11496) on :
 
It is time to move on...
 

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Posted by AliG (Member # 9734) on :
 
Just a thought I'm having....
If he didn't believe in co-infections, why would he order a test for Bart?

I believe Stony Brook is known to have a good lab, but lousy doctors. I thought that they were pretty good with co-infection testing, ranking better than Quest or Labcorp. I hope someone else can give input, but that's what I believe I've heard.

Does anyone know, offhand if Biaxin/Plaq would Tx Bart?


 

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Posted by Angelica (Member # 15601) on :
 
This is a post someone sent me from another site when I was curious about what works for bart.

Bart meds

"I've done rifampin myself and found bactrim to be just as effective against bartonella. I don't think doxycycline plus rifampin is that great of a combo. I think zithromax plus rifampin would be much better. You could swap out zithromax for any of the other macrolides such as biaxin, ketek or roxithromycin.

Minocycline plus rifampin would be more effective against bartonella versus doxy/rifampin. Below are some bartonella options. Going from least effective to possibly the most effective. You will notice a correlation between the most effective abx for bart and the most worrisome of side effects. The ones in bold have the most dangerous side effects."

Clarithromycin
Azithromycin
Minocycline
Bactrim
Mycobutin
Rifampin


Ciprofloxacin
Levaquin
Streptomycin
Vancomycin
Gentamicin
 

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Posted by psano2 (Member # 11711) on :
 
If he doesn't believe in or is unwilling to treat coinfections, then I'd find another Dr if I were you.

I had to make a Dr. change last year, and it's made a big difference for me.

Patti
 

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Posted by Peacesoul (Member # 13709) on :
 
How can an LLMD not believe in co-infections yet the labs all test for them?!
Ok well anyway, I see two options, you either find some fresh meat (new LLMD) or try to convince him about co infections.

If you have the opportunity, I would find a new LLMD, Always good to get a new perspective anyway.

Have you see any other health professional in these two years like a Naturopath or some other natural dr that treats lyme and co infections?
 

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Posted by wiserforit (Member # 9732) on :
 
I'm so sorry that you are going through this doctor-doubt time.

I had this happen with my first doctor, because he was really wishy-washy about treating co's. He was also guided by insurance companies regarding where he'd send Lyme tests; simultaneously he said he placed very little credence in tests.

The straw that broke the camel's back for me was when he became angry when I persisted on asking about co-infections. He said, "so what do YOU want to prescribe yourself?!" He also said angrily that he didn't know what was wrong with me, yet that he thought I "should just accept the Life with Lyme."

It blew my mind. When I found a second LLMD, they turned out to be a brilliant, compassionate communicator. What a difference!

I don't mind when the new LLMD says "I don't know" about questions, because he's willing to experiment and work with me. To not address concerns directly, doctors can inadvertently make us doubt their faith in our ability to heal.

Good communication even without certainty in answers helps me find hope. We all need support as we struggle to find the right balance of meds, etc. We need encouragement.

I say, time for you to find some one new!

Hugs and best wishes for you,

wiserforit
 

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Posted by JillF (Member # 5553) on :
 
i would look into seeing a new doc

i believe many, many ppl w/lyme have coinfections. not all but alot do

and, just imo, i would not recommend dr s in chadds ford. if that's who you're seeing i would def get a second opinion. just my .02 cents
 

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Posted by Alv (Member # 15192) on :
 
If you still got band 30 than your lyme is neuro.

And I think bart can do the trick and put you back right away where you were.BART -Should be addresed imidiatly -or you will never improve.

Move on ....
 

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Posted by kitkat32 (Member # 9682) on :
 
Thanks to everyone for all of your thoughtful replies. I was out of town all day with my family so this is the first I have been back on line.

I see Dr. C in Mt. Kisco, NY. I feel so let down by him now it's unbelievable.

I made an appt. today with Dr. H in Hyde Park. My first appt. is July 8 with his PA but he will come in for part of the visit. Don't know how I will be paying for it...probably credit cards but..I have to do something.

I have to get my records sent over. I hope one LLMD doesn't have a problem sending to another.

Can you believe I actually feel guilty for going for a second opinion???? I just put all my trust in him and he has let me down. I am not looking to be cured immediatly. I know that it takes alot of time if ever at all. But, I want some darn support through this.

I shouldn't have to beg to be treated for a co infection. I did do a round of 30 days Levaquin some time ago. I only got that because I insisted on it.

Thanks again to everyone...I knew I would feel better after reading.

If anyone has any personal experiences with Dr. H I would love to hear them.

kit
 

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Posted by roro (Member # 13383) on :
 
I think everyone is being very hard on this LLMD.

It sounds like you have gotten many very good treatments, rocephin, combo's, plaquenil and biaxin. it sounds like he IS treating you for co-infections.

I dont know what you expect from him, or what you are trying to get. he is not God, and cannot cure you, no doctor can.

lyme is a very complicated disease, and all the co-infections complicate it more. there is no standard treatment, and there is no cure.

the best we can hope for is to feel a bit better for a while.

if you are asking him questions and he is saying he doesn't know, then he is being honest with you.

what other choice do you have? we are all guinea pigs. we just have to keep trying, or give up and die. those are our choices.

I dont mean to discourage you, but if you have been doing this for two years you should know this by now. we need to keep hope alive, but not expect miracles from the LLMD.

lets just hope more research money is put into this disease and they find the cure (if there is one) before we die or become so permanently disabled that its too late.

I just dont want you to think spending more money on a new LLMD is going to cure you, it may not.
 

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Posted by viva (Member # 8183) on :
 
I think it is possible to appreciate what your old/current LLMD has done for you, and to decide to switch. That is what my husband did, after much research, agonizing and guilt (on my part). Somehow it felt almost disloyal to our old LLMD, who had brought my husband back to 70-80% functioning after many years of illness.

One wise Lymenet member wrote to me once that "no one LLMD is perfect." I think our old LLMD was right for my husband during the first two years of treatment. But we got to the point where we needed another set of eyes to try to figure out what was going on.

I told my husband that in the first 2 years, he was like the side of a barn: any meds would've hit something. But now we need a sharpshooter.

It felt huge and scary to switch, especially since we had to fly to the new LLMD (we could drive 8 hours to our old one). Although we've just had one appointment, I feel very good about the diagnostic tests that are being done, the fact co-infections are being called by their names, and the thoughtfulness and knowledge that is going into the treatment plan.

So...it's not necessarily a slam against one's old LLMD to see a new one. I think it can be a needed part of ongoing treatment for such a complex disease. And if you leave gracefully, with the door open, you can always go back.

Good luck with this huge decision. I know how tough it is.

Viva
 

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Posted by Keebler (Member # 12673) on :
 
-

Viva: you said: " . . . I told my husband that in the first 2 years, he was like the side of a barn: any meds would've hit something. But now we need a sharpshooter. . . ."

Very good analogy. And sharpshooters don't just shoot. They study characteristics, patterns, etc. (in this case, of the specific infections).

-
 

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Posted by NMN (Member # 11007) on :
 
Roro.....I dont like people throwing around this "no cure" cr*p when it comes to these TBI's. I just don't think it really apply's here. I feel sorry for you that you have such little hope.
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"lyme is a very complicated disease, and all the co-infections complicate it more. there is no standard treatment, and there is no cure."

"the best we can hope for is to feel a bit better for a while."
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Postings like that really p*ss me off when I read them. No thats the best YOU can hope for!!

I intend to get my full health back and so does everyone else in here I would imagine.

The fact is, Most people get well from these diseases and get on with their lives and some have had to go through a few doctors to get it and so be it.

Kitkat sounds like a good move you have made and I hope it works out for you. I think Co-infections are key to recovery too, and it is exactly why I left my UK LLMD to go to Dr H in NY also. Two weeks to go...Bring it on!!


 

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Posted by kitkat32 (Member # 9682) on :
 
I too feel I am being disloyal to my current LLMD. I never said that he hasn't helped me. He in fact has.

My problem is that he should be giving me med combos with input from me. I shouldn't be going in there telling him what will work best.

I do not think my doctor is God. I also don't think I should be slammed for asking opinions and being nervous about switching doctors.

I have recently learned that this particular doctor was removed from the referral list because of his non belief in co-infections and alot of complaints.

The only reason I was treated for Bartonella is because I demanded it. After I started on the Levaquin I got no help from his office. None of my questions were answered. I should also mention that there is never discussion of a herx reaction.

I would also like to point out that I am not a dumb person. I have worked in the health field for many years. I have also been ill with this since 1996.

I appreciate when a doctor is honest and says I don't know to a question. That shouldn't always be the answer though. Is my lyme harder to treat because of previous steroid use? "I don't know."
Do my labs and symptoms indicate lyme disease? "I don't know" Is it normal to feel this terrible 3 weeks after taking this abx? "I don't know"

I want some support and encouragement from my doctor more than I want the miracle cure. You tell me to have hope but yet you say there is no cure and we can only hope to feel better for a little while. I don't believe that. While there might not be a golden cure it is possible to live a healthy life. I have spoken to others who have been symptom free for 5 years or more.

I don't thank my doctor for all the different combos of abx I have been on. I thank myself. It is me who requests them. While I find it to be very important to be part of my own health decisions I don't want to be responsible for all of it.

I am not dumb enough to think that spending more money on a new LLMD will cure me. In fact several months ago I was part of a debate on the high prices.

I have done research. Spoke to others who see this LLMD, Dr H. I also went to a forum in CT that he was speaking at. He is very smart and he believes in treating the whole body..such as adrenals. I spoke to him one on one and got more support from him in 15 minutes than I have gotton recently.

My current LLMD also went from returning phone calls rather quickly to not returning them at all. Office use to be open 5 days a week now it is down to 3.

So, don't judge me because of my feelings about this or imply that I should no better by now.

Yes, I will be spending more money on this LLMD. Money that I don't have right now. If his treatment helps than it will be money well spent. If not, I will have to move on again. I will not keep paying someone though if I am not getting the service I deserve.

kit
 

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Posted by docjen (Member # 7510) on :
 
Kit:

I think you are expressing emotions which all of us have at some point, and that is discouraged that the medical establishment does not have more research and evidence upon which to make decisions and judgements. But the fact is...the evidence just isn't there. We can't fault the docs for not knowing when the field just unfortunately doesn't know yet. If he is a bad doc, that is one thing. But not knowing the larger questions about lyme is another.

Good luck.

Jen
 

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Posted by carly (Member # 14810) on :
 
Kitkat

I wish you luck, and from what I have heard you will be impressed with Dr H.

Bottom line: you are the consumer. You pay the doc to treat you. You aren't sure you're getting what you're paying for.

No, doctors aren't perfect. I don't think you're asking for perfection.

carly
 

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Posted by roro (Member # 13383) on :
 

quote:

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Originally posted by kitkat32:
My problem is that he should be giving me med combos with input from me. I shouldn't be going in there telling him what will work best.

I have recently learned that this particular doctor was removed from the referral list because of his non belief in co-infections and alot of complaints.

The only reason I was treated for Bartonella is because I demanded it. After I started on the Levaquin I got no help from his office. None of my questions were answered. I should also mention that there is never discussion of a herx reaction.

I don't thank my doctor for all the different combos of abx I have been on. I thank myself. It is me who requests them. While I find it to be very important to be part of my own health decisions I don't want to be responsible for all of it.

I have done research. Spoke to others who see this LLMD, Dr H. I also went to a forum in CT that he was speaking at. He is very smart and he believes in treating the whole body..such as adrenals. I spoke to him one on one and got more support from him in 15 minutes than I have gotton recently.

My current LLMD also went from returning phone calls rather quickly to not returning them at all. Office use to be open 5 days a week now it is down to 3.

kit

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quote:

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Originally posted by docjen:
Kit:

I think you are expressing emotions which all of us have at some point, and that is discouraged that the medical establishment does not have more research and evidence upon which to make decisions and judgements. But the fact is...the evidence just isn't there. We can't fault the docs for not knowing when the field just unfortunately doesn't know yet. If he is a bad doc, that is one thing. But not knowing the larger questions about lyme is another.

Good luck.

Jen

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quote:

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Originally posted by kitkat32:

If anyone has any personal experiences with Dr. H I would love to hear them.

kit

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