Well, the roads were ice and we did not go. The said we broke his rules(??) They will not give any other explanation.

He is on IV everthing was going very good insurance approved for 9 months now.

The only thing different was the month before this happened we told him myself and daughter had to stop coming because we could only afford husband right now until he got back to work again.

Now this,

Can not believe he is being this cold. Has anyone else with IV had to see there LLMD every 3 weeks instead of 4??

He knew from the start of IV that my husband saw his primary doctor in between visits (every 2 weeks) for port checks. LLMD said that was fine as long as a doctor was checking it then every 4 weeks with him was good instead of 3.

We did everything right. Never once complained about his long wait times, and expense.

We feel wronged by him. He will not answer any of our phone calls. Will not explain nothing to us. Just said by misssing that one appointment (and I tried to get it for the next good day) he broke his rules.

This is a doctor that I feel as long as he was getting 630 a month from the 3 of us and had to go down to 210 from just husband and knew we were pretty much broke( he took all our savings) he decieded to make so phoney rule.3 days proir to this visit that was missed he went to our local hospital and had a total port check ( dye ran and all) and blood work showing everything was good,

We told doc. this ( or his wife) when she said he had to be seen that day or else.

I am at a loss.

I am feeling like we put all our faith for this long in the wrong doctor.

He even knows my husbands mental state is not good. Doctor says he and wife have lyme themselves so he has to know what this stress he has caused is doing to my husband Help...........

Question ??
He is approved til May for his Rocephin is this doctor gonna pull that??

Should he continue with it??
He was so upset last night he would not let me give it to him. This is month 7 of rocephin straight was approved for 9.

Just do not know what to do. I have been calling for another LLMD. Long waits.. do not know what to do in the meantime.

His primary is really good but before she makes a decicion about his treatment wants to see his records from LLMD. I do not think he will give them to us. I have seen him refuse to give other peoples theres. ( should have been my first RED flag)

Husbands primary has always approved of this doctor knowing what he is doing and has never questioned husbands treatment. She just is not real lyme literite yet.

Help???

quote:

---

Originally posted by proud pup:
Thanks,

Question ??
He is approved til May for his Rocephin is this doctor gonna pull that??

Should he continue with it??
He was so upset last night he would not let me give it to him. This is month 7 of rocephin straight was approved for 9.

Just do not know what to do. I have been calling for another LLMD. Long waits.. do not know what to do in the meantime.

His primary is really good but before she makes a decicion about his treatment wants to see his records from LLMD. I do not think he will give them to us. I have seen him refuse to give other peoples theres. ( should have been my first RED flag)

Husbands primary has always approved of this doctor knowing what he is doing and has never questioned husbands treatment. She just is not real lyme literite yet.

Help???

---

Also the list I gave you start calling right now and explain to them what happened and see what they say. Maybe one of them will continue yur script fo Iv and get blood work done for you. Good Luck I never heard of such a thing.

We found out last May when my daughter has just attempted to slit everything in her wrists and called his office for advise..My call has yet to be answered..However, we were asked to let her info be included in one of his studies.

Do you think the neuro he sees ( who gave second opinion) might help us?? Or in your opinion do you think this LLMD and neuro might be working together ?? We see him next week. Will in mean time start calling.

Remember the goal is to get all of you well. Things have a way of working themselves out.

I think kam had a great idea that could indeed work. Dr shopping at this time is not fun, but your husband really needs someone ASAP. I understand how abandoned you both must feel.

I pray you will find someone soon.

-----------------------------
tree.....what's this about "courses?" My little brain can't figure this out!??

First of all, please be aware that there may be other treatments that can help besides rocephin. The Burrascano protocol, if you agree with it, says Lyme responds to a rotating combination of antibiotics, treatment for co-infections, and treatment for systemic yeast. Different doctors prefer different versions of this protocol, so there is no standard treatment for chronic Lyme.

You should know, however, that something is happening in the relationships between many established LLMDs and their patients. Some are kicking people with money issues out of their offices. Others are giving people part of the Dr. B protocol but not all of it, which gives patients enought improvement to keep coming back but not enough to be cured. You are not alone in this. Your husband, for example, has been on rocephin for a very long time.

But meanwhile, a lot of establishment doctors are secretly starting to use the Dr. B protocol. They don't dare talk about it in public, but if you contact different Lyme organizations, they may be able to give you a few names. In my area, some of these doctors do take insurance. Even the ones that don't, however, have initial fees that are expensive, but significantly less than what you would pay for many LLMDs.

quote:

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Originally posted by liz28:
You've touched on a huge issues which Lymenet is not quite ready to talk about, but which I've been hearing about in private emails.

---

-----------------------

PP.....I agree that Rocephin is not all it's cracked up to be. If the IV is stopped, I would STRONGLY urge your husband to take Flagyl and Biaxin or something similar.

The Roc causes many of the keets to form cysts and those have to be attacked. Otherwise he will relapse bigtime.

Good suggestion about contacting LDA.

I was dropped by my SSDI lawyer after almost 4 years when I received my lyme dx. 8-04.

So sorry this has happened.

As for getting the medical records, they belong to you and he is obligated to provide a copy according to federal law, HIPAA (sp.) You may be charged a small fee.

You probably signed a form at his office about HIPAA when the law became effective.

To refuse patients medical records, even with an unpaid bill, can be BIG time trouble. (Investigation & fines; not a good thing for any LLMD)

Best Wishes,
Jan

I see a doctor in NJ. He is pretty good. You can e-mail to get information on him.

Take care.

Don't think too lowly of your doc. It's not unusual for lyme docs to drop us after a period of time. For our docs to treat us for more than a year is a risky venture for them. You can't blame them for being concerned about losing their licenses.

I don't know if you are keeping up with current events , but the OPMC is picking off our LLMDs one-by-one.

So sorry to hear this...

I just need to ask..Are you in fact sure the Dr. said this? or intends this?

I just say this because sometimes the staff and nurses in the dr.s offices can take matters in their own hands and say things the dr. is not even aware of.

They sometimes start to think it is their own practice or something like that.....

Unprofessional....but just a thought.
Your dr. might not even know what was said...

I paid it because I he was the first LLMD that I had seen and I had heard that he was awesome. Well, yes, he did diagnose me, but what a waste of only an hour. I won't go into details, but I didn't think that it justified the cost.

I just heard that his initial appointment is over $700 (not including the bloodwork). Personally, I think that that kind of money is highway robbery.

I think he has good intentions, but the whole money issue bothers me. Plus, unfortunately Lyme patients are between and rock and a hard place and a lot of times we have no choice but to pay the "asking" price.

Please don't think I'm bashing Lyme docs... I'm not. My sister-in-law works for a neurologist who just invested THOUSANDS of dollars to have an "infusion center" for the new MS drug, Tysabri. Yes, it's a great drug, but his MAIN motivator... MONEY. He is making a TON off of this drug. BTW, Tysabri was pulled off the market this week.

Money/greed has caused entire nations to fall. Luckily, I have to believe/hope that most LLMD's have our best interests at heart.

What do all of you think?

Proud pup, I'm so sorry to hear about the problems that you are having. Especially in the middle IV. My prayers are with you that you can either work it out with your doc or find a new one soon.

Sorry about the rambling (and not adding any great info). :-)

I'm with ya. I've got a LLMD, who has had issues in the past with this type thing. It's so unpleasant to say the least.

I think that in the midst of everyone getting up in arms over cautioning all Lymies to "be careful" about LLMDs due to the issue of them treating us in the midst of it being such a hot topic with insurance and losing their licenses and such--we still need to remember that these docs are human, and are not SUPERMEN/WOMEN!!!

They are just like everyone else, albeit they are also taking a risk by treating a subset of patients that can cause them to lose their jobs/licenses that they worked so hard to get.

That said, I still believe that the issue of PATIENT ABANDONMENT is worth pursuing. It is illegal. My son's pedi brought this up when we were facing a similar instance of my LLMD refusing to continue issuing rx scripts when my son needed to be on abx, but I could not wait until the LLMD's next available appt. to bring him in to start the abx.

Your LLMD is abandoning your husband. It is very clear. There is not instance where this would not be so---refusing to treat him because you could not reach his office is NOT GROUNDS TO REFUSE TO TREAT. Or, to continue treatment. Unless there is more to your story, it does not sound like patient non-compliance, where your husband was doing something treatment wise, that was putting the doctor's license at risk. (I know, this sounds silly, but it's true)

Cancelling and trying to reschedule the appt. is not grounds to refuse to treat. I cannot say this enough. Whatever his "office policy" is, patient abandonment (especially since he's in the middle of IV tx.)is serious business. Not one I'd heard about before this happened to me and my son, but it rang a bell after my pedi told me that what my LLMD was trying to do smelled of it.

And, I also agree, that, maybe your LLMD does not realize that his staff is doing this to you. If you could, it may be worth pursuing, just to see if this is possibly the case. Somehow, try to get thru to the LLMD and see what he says.

And if you are just so soured on this LLMD, then time to switch, a very difficult and mentally challenging feat, to be sure, but it also sounds like this LLMD is putting his patients thru hoops that no sick person should have to be jumping thru.

You gotta wonder if these LLMD's just think they're superhuman because they ARE treating high risk type patients. I myself think that they shouldn't be, but they are HUMAN. and to be sure, they're not God(s). We need to keep them off the pedistals that so many people here put them on.

You're so not alone, as Liz alluded to. It's just not common fodder here on this site due to the issues that most LLMD's face, and as their patients, we try to avoid putting them into by talking about all the crap that we see.

Sorry it happened.

Email me and I will see if I can get you in to see a LLMD ASAP so the treatment can continue. OK?

[email protected]

She said to call a phone # she gave it to my husband. She said they were taking care of it now.

When we called it was a lawyer office, and they said all they know is his office will not see us but after husband told the story the lawyer office said it did not sound like any reason to stop seeing him and said they would call doctor and get it taken care of.

They also agreed we should get another doctor ASAP ( this coming from the LLMD's own lawyer)

I really thought I had done all ther research about what goes on but I guess not.

Sorry to be dumping all this on everyone. I am in NO way talking bad about what the LLMDS do for us. With out them my husband would probley be dead.

I support LLMD 100%. Just not this one anymore. We have even sent friends there to be treated. Not no more.

Going to the hearing for the MD lyme bill on March 10th. I can only pray it will be passed in Maryland so it can start the ball rolling for all of us.

His follow-up appointments are pretty reasonable financially too.

I do know that he does IV antibiotics but I did not need it. He is treating me for Bart, Bab and Lyme.

Pup.. you are 100 percent right.

You said..

"Going to the hearing for the MD lyme bill on March 10th. I can only pray it will be passed in Maryland so it can start the ball rolling for all of us."

THAT is the way to correct the situation!

We ALL need to be able to go to a local doctors office.. and get PROPER treatment!

We need our regular insurance to pay for it!

We need the doctors who treat us to be protected!

Instead of folks whimping and whining about this and that.. kinda like going to a sushi bar and expecting to be served a cheeseburger.. then crying cause we weren't....

We need to do something about it. Kicking LLMD's because we are limited in some way is NOT the solution.

Without LLMD's MOST of us who have been dealing with this would be DEAD now.... or wishing they were.

Without LLMD's we would ONLY have Bumsteere types around.

Without LLMD's we would have steroids as the drug of choice.. and a short life expectancy.

If someone doesn't like the way LLMD's are doing business..

FIX the whole situation.

EDITING HERE TO SAY- Cross out the above statement and replace it with...

Do what you can to fix the situation for yourself and your family.. and all of those who will some day be in your shoes. Be pro-active and don't wait for others to solve your problems. Do what pup is doing and fight for what you believe in.

Spend the day doing everything you can.. busting your bums.. and moving in a positive direction so YOUR life will be better.

Go to the AMA.. the lawyers.. the hospitals. Help organize a solution that will help us all.. like pup is doing.

Give up your spare time on the weekends.. your evenings.. your extra money.. and make a difference by making an effort instead of whining about some of the LLMD's.

LLMD's aren't perfect.. not by any means...

But God help us all if we didn't have them on our side.

If you want things to change..and want your families to have quality care and don't want to have to go to a LLMD... get off your duff and do something about it.

Ok.. back to work I go.

I guess I was saying what Just Julie said... They are only human. Just like there are reg docs that are wonderful and not so great, the same goes for LLMD's.

Proud pup, it does sound like it's time to move on - especially since the LLMD's lawyer told you that!!

I would love to be able to spend all day on behalf of Lyme activism, but due to kids, family, church, school, work, etc., etc. - those things come first. I guess the best that we all can do is try to weed through this journey making the most educated decisions that we can, using our knowledge and gut feelings. It sounds like your gut feeling is to move on...

All the best to you and your husband! Do you have a new LLMD in mind?

Shelly :-)

FIX the whole situation. Spend all day doing everything you can.. busting your bums.. and moving in a positive direction. Go to the AMA.. the lawyers.. the hospitals. Organize a solution to help us all.

I say:

Sorry, but the blanket statement above is not a one-size-fits-all type that would fit ANY of the 99% of us that have other components in our lives, as skrwolf mentioned---kids, spouses, work, etc.

If you happen to be in a season of your life where your kids are gone, your husband is self-sufficient, you have staff to clean your house, cook your food, do your laundry, your yardwork, etc, then you may be able to swallow the statement "FIX the whole situation".

I do think that type of statement does a tremendous disservice to those of us who are not only incapacitated in some form or another by the Lyme crap, but also those of us who are trying to keep it together for our families.

We do what we can. Try not to expect superhuman feats by LLMD's who are only human. Pass along any tidbits of help that we have found to help US in our journey, to others who are still traveling it, and not be labeled as "whiners". Sorry, don't buy the give up your life, and join the crusaders bandwagon. Very unrealistic.

There are those people who will find it to be the right time in their lives to do activist work, and do what they can, but there are those of us (I speak for myself here) who are not there YET.

I'm not a whiner. I don't think Proud Pup was whining either.

You are right...

I shouldn't have said to fix the "whole" situation.

Obviously that isn't possible for one person to do.

I went back and edited my post.

Thanks for pointing that out to me.

------------------
If you get the choice to sit it out or dance...

I had a slightly similar situation that was caused by MD egos. My PCP sent me to a very good specialist for agressive Lyme treatment. I liked the specialist alot but continued to do follow-ups with my PCP every week in-between appts. with my Lyme MD.

My PCP added some orals to my IV treatment protocol, which ticked off my Lyme MD's staff. I was told, "There are too many people treating you for the same disease". Sheesh! I was left with the decision to work exclusively with the Lyme specialist or with the PCP for Lyme treatment.

My decision was made easy for me when my PCP joined another practice that was further away. This coincidental misfortune put me in a situation where I was able to switch all my care to my Lyme MD, who also has an Internal Medicine practice. In the end, I was glad I did this because the two were butting heads about my treatment and my Lyme MD was becoming less interested in my case.

I'm wondering if you could find a good MD who can act as both your primary and your LLMD. That way, the LLMD won't be inclined to brush you off. I know, this may be a pipe dream, as the 2 don't always go hand-in-hand. It's just a thought.

As far as the records. I was able to get all of my records transfered, no questions asked. They have no choice, especially if you signed the Hippa form. They are yours - you paid for them. I was asked to pay for photodopying time once. I agreed to that but thought it was a ridicoulous request. I even offered to do the copying myself. Get your PCP to request the copies for you.

This will work out, even if you have to go to the hospital for line checks and bandage changes in the interim. It is completely irresponsible for an LLMD to leave you high and dry when you are on IV therapy. Personally, I would report him to his medical board. But, then again, I am only reading your side of the story, which is the one I have to believe.

Bc

We need to all work together to do what each of us is able to do and collectively we will be strong enough to hopefully fight the battle and win..

I can see all points here..They are all valid. As a mom and hopefully not a lyme victim, I am overwhelmed currently..I am going nuts by anyone's definition..Most in my shoes would not have time for lymenet but it is one of the few things helping my sanity and trying to help the MD cause..I am so very close to hitting a wall.

Some of you have other priorities..I am barely cooking, cleaning or doing clothes..I am ripping a bathroom apart to eradicate mold while my daughter is in the psych ward and have to take breaks..But some of you are also dealing with the disease yourselves and trying to work and you do not have the time or ability to be an advocate..(But Tincup and another advocate have gotten my daughter to this point regarding lyme and finding help.) DO WHAT YOU CAN, WHEN YOU CAN, IF YOU CAN AND TRY TO KEEP YOUR HEAD ABOVE WATER.

Also I do not know what I would do were it not for some good lyme doctors..They are trying desperately to save my daughter's life. And they are more dedicated than any medical professionals that I have ever met..They should be up for sainthood...But I have also had a horrible experience with one..And he is a genius..NOT sure what all of his problems are. We will not let a few rotten apples ruin the barrel..We need them..They are our heroes and life savers..

As for Tincup..I do not think she has a life at the moment..She is truly my hero..She has been exposed to more of the diseases than probably anyone living and yet she devotes her every breath to research for our recovery. She is sacrificing her own health to help us and she is so immersed in the work that she is frustrated that everyone is not giving 100% to the cause..She knows if more would help, it would equate to better care, positive legislation and faster cures.NO ONE IS DOING MORE FOR ALL OF US THAN TINCUP IS DOING!!! Just try to understand her forcefulness is meant to help not hurt. I wish we had a 100 Tincup's.

And I apologize to all for my thoughts..I do not mean to offend anyone..We are all in this Hell cemented together by this damn bacteria.

Tincup is on huge lyme mission not only for the lymies from Maryland but for ALL of us in hopes that if ONE state passes the lyme disease bill NOT prosecuting our LLMDS and TREATING our lyme, it will be set a PRECEDENT for the other 49 states to follow.
============================================

She's totally gung-ho on this and keeps encouraging all of us to get involved providing more statistics for her state's legislative committee she is speaking too.
==========================================

Back to poster's original comments.

Have you gotten a NEW LLMD to go to? If yes, go to your drs. office signing the HIPPA form, and TAKE your complete file with you for your new dr. Tell them you will not be back so no need to copy when their original copies will just take up space.

I paid $15 to local clinic for 15 yrs. worth for my 1st SS disability insurance claim; well worth it.

I paid $10 to hospital for my surgery
records.

Once you get your records, ask a family member to COPY all of them for you so you can have at home or for a future SSDI claim/hearing. Perhaps family member works in an office and can do for you.