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.
posted
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.
Posts: 847 | From upstateNY | Registered: Dec 2007
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tailz
Unregistered
posted
Who are you seeing in PA? Dr. S in Chadds Ford? Dr. F in Kennett Square?
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
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?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Angelica
Unregistered
posted
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."
posted
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
Posts: 975 | From California | Registered: Apr 2007
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Peacesoul
Unregistered
posted
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
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
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
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
Posts: 1485 | From USA | Registered: Apr 2004
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Alv
Unregistered
posted
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.
posted
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.
posted
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.
Posts: 615 | From maryland | Registered: Oct 2007
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posted
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
Posts: 532 | From southeast US | Registered: Oct 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
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).
posted
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. -------------- "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." -------------
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!!
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
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.
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
Posts: 393 | From Washington, DC | Registered: Jun 2005
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quote: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
I am very sorry, I did not know all of this. I agree you should switch doctors. he does not sound like a LLMD, but just someone who treats lyme. Yes HE should know the abx combos, not you. And if he was taken off the list, then that is probably a good indication that he is not a good LLMD.
And I was not slamming you, I don't know you at all. If I should know you (from here, or chat, or PMs) I am sorry, I don't remember, I dont even remember posts that I posted sometimes. I go read something I wrote and can't remember posting it.
I just saw that you have been on all these different combos, even IV rocephin, and still not better. I didn't realize you were trying to do it yourself. I thought the LLMD must have been good if he tried all these combos.
I do know that many people get better, but some people don't, and its not always the fault of the LLMD. Yes, I am discouraged, and I am one of those people who is not cured, and I don't believe there is a cure for me. I have a lot more other problems other than TBI's.
I should have read other people's responses before I posted. I wish you the best with the new LLMD.
[ 01. June 2008, 05:34 PM: Message edited by: roro ]
Posts: 615 | From maryland | Registered: Oct 2007
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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
this says what I was trying to say with a lot more tact and eloquence, and without the emotion.
The types of questions, like am I feeling a herx, or are my symptoms from bart or are they from babs, those are things that the doctors just don't know.
[ 01. June 2008, 05:33 PM: Message edited by: roro ]
Posts: 615 | From maryland | Registered: Oct 2007
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quote:Originally posted by kitkat32: If anyone has any personal experiences with Dr. H I would love to hear them.
kit
He's great. You won't have to direct your own treatment and you won't have to argue to get coinfections treated. Working with a PA is fine, he has trained them and you still get to see him periodically.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I got a second opinion from Dr. H because my mom was frustrated with the lack of agression Dr. G was using. My over all experience with him was TERRIBLE. He didn't even meet with me for 10 minutes before throwing out meds, doubling the ones I was already on and telling me I would be finished with IV in two months.
My body couldn't take the meds. I missed over a week of work (they don't know I have lyme) from the herxes it gave me. I went back to Dr. G and she pulled me back down to what I was on before.
The tough thing about lyme is that there is no ONE way to treat it. A good doctor will test and give you scripts, but a great doctor will test, look at your history and prescribe in a way that won't harm your body.
Lyme as I have learned is not a "quick" fix-it's a lifetime fix and I'm sorry that he isn't helping you. He's a young doctor and I think he means well, but I did not like the way he practiced. If you do not feel in tune, there are others that you can reach out to within 15 minute of him who I highly reccomend.
I have babs-what is "air hunger"????
Thanks, Lindsay
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
Also I forgot to add Dr. H. in Hyde Park saved my friend's life . She had Babs/Lyme. She is better now. Was near death. Best Teresa
Posts: 115 | From warwick, new york | Registered: Mar 2008
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posted
I am grateful for the support I have received through this thread.
I am sorry that it has started a debate on whether LLMDs know everything. I did not mean for it to turn into that.
Like I said before through, I don't expect a doctor to know all the answers, especially when it comes to this disease.
Simple questions should be addresed though. Co-infections should be tested and treated. Not knowing the larger questions about Lyme disease is one thing...but not treating co-infections even with positive tests through 2 different labs is another.
Lindsay,
Sorry Dr. H did not work out for you. I have heard that his treatment can be aggressive. I hope I can handle it. I hope your current doctor is making progress for you.
Air hunger is when you are breathing normal but feel your just not getting enough air moving. When I get it, it feels like there is a weight or a rubber band around my chest. I know I am breathing fine but I don't feel like I get get enough air in my lungs.
JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
don't feel badly about switching llmd's (though harder to do than say, i know)
not every llmd is a good fit for everyone. every person's case is different - sometimes the dr can only get you so far for multiple reasons. there are just so many elements to tickborn diseases.
and no doctor knows everything or is always right...they can get stuck in a rut with their patient just as we do in our own lives and jobs. we always need to keep that in mind imo
the good thing is that the current llmd got you better. hopefully this next one will get your health even better
i went to a prominent llmd who was referred to me by dozens of ppl. he got me much better but there were some problems with him. one major one was that i had alot of pain from taking levaquin that he told me must be due to my weight (yeah, i'm overweight but it's never caused me pain, much less SEVERE, excruciating pain with any small movement) - it was so bad that i couldn't
walk w/out help anymore, i could not go up/down stairs, sit up/down, lay down, stand up, etc w/out help and literally crying in pain. walking in itself was a horror. i had none of this pain before starting the drug. it literally started within days of taking it. it was the worst pain i've ever had. he ignored my complaints and said it surely wasn't the medication. the pain was getting worse and worse as i continued to take the drug. i was worried about long term damage. i decided that i needed to take control of my health and went off it on my own, against his orders,
and called his office and told his assistant i went off the medication. i knew the pain had to come from the medication...and i have never had that pain since quitting levaquin (thank GOD). and he didn't even acknowledge that he had clearly been wrong about
the medication or that it caused me severe, disabling pain for those wks i had stuck through it or that it could have caused long term damage. to myself and my husband, it seemed he didn't care in the least. and then, at the end of treatment, when he told me i was cured i still had tons of symptoms.
i went to another llmd, someone who had trained with him, and ended up actually testing positive for babs. the new llmd treated me for babs, bart and lyme. she couldn't believe i was told by the first llmd that i was cured.
and when i mentioned this to some ppl about this llmd (some who referred me to him, others who had found out that i had seen him, others who had been patients or knew patients of his) they thought i was crazy and i was in the wrong and that clearly such a great llmd, who is so well known, would never make such mistakes or be wrong
i'm thankful for that llmd, he got me much, much better than i was. he also taught me to trust myself, to learn to say no when i think something is really wrong even though the doctor disagrees.
point of my story is that not every doctor is always right. not every doctors' treatment is going to work for you. sometimes you need to get a 2nd opinion, sometimes you need to move on. nothing is wrong with that. and some ppl might take offense or get salty that you weren't happy
with said doctor/doctors' treatment but that's their problem, not yours. they don't have to live your life and they don't know the entire story
basically, it's your health. noone feels as you do, noone knows your body as you do, noone cares as much for your life and your health as you do. you gotta do what you think is right for yourself, your life, your health
so you've outgrown your llmd - he's helped you as much as he could, there is nothing wrong with that. now it's time to move on. don't feel guilty. a year from now when you're feeling much better, you'll know that you made the right decision and you moved on at the right time
we outgrow a lot of things through out life. it would only make sense that doctors can also be outgrown
Posts: 1485 | From USA | Registered: Apr 2004
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Kitkat, i really hope the new llmd works out for you. You deserve the best possible, we all do.
I find after the 2nd appt the LLMD's I have seen will ask me what abx has worked for me in the past.
I have had to decide on most of all my treatments. I thought this was the norm for ILADS until i talked to more people recently on PM.
I also think if the dr does not believe in coinfections you should move on. What if it is the coinfection that is your MAIN infection.
Hang in there, you are in my thoughts.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
I'm still with the same LLMD I started with, but I have had second opinions from Neurologists, Rheumatologists, and all sorts of other ologists.
I feel that the question isn't "are they a good doctor" but "are they a good doctor FOR ME?"
Some people want a doctor that uses a holistic approach, others want aggressive abx, but I think it's really important that you feel good about your doctor.
There are so many uncertainties with this illness, at least I feel like this guy is taking care of me. I wouldn't feel bad about switching, because you're not necessarily saying that it's because he's a bad doctor. Just not the right doctor for you.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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