You may remember my post about a month ago about my LLMD (Dr. H ) who berated me, and shocked me....well, I just got a letter in the mail, and as of September 23, he's no longer treating anyone, but going into full time research. The worst is, that since my last visit, he's sent me to HIS shrink, to help me decide whether or not to do the Cichon protocol (a central line, yet again)who of course, was out of network, and then, in the letter, he lists MY children's local pediatrician and her phone number as a "specalist who doesn't treat lyme, but is well aware of it and it's effects." He tried giving her name out four years ago, when she did nothing but agree to go along with Jones' treatment for my children, and he scared her off...we have gently held onto her...and now, she's literally #1 on his "hit list." She's going to die when the calls start pouring in....

I am so infuriated.....I guess my appt. in Oct. is cancelled, and I don't have to decided whether or not to get a central line...what a jerk....my pediatrician should sue him....

I'm sorry!!!I'm just venting....

He's worse than ducks....he roped me in, acted like a savior, used me, became famous, and now has dropped me....what is this, high school???!!!

The only doctors he mentoned for us to go to here in Houston were an ID doc (oh great) and a guy that is/was in his same practice (don't think I want to go there...)

I guess I do have to mention that he was thoughtful enough to include the medical records release forms- free to another doc, but $$$$ if I want a copy myself....

AGHHHHHHHHHH!!!!!!!!!!!!!!
 

Well, I was thinking of E-mailing you today to vent my problems, but was afraid you were doing your IVs.

This is the first I've heard of this. I guess I'll get my letter Monday.

My last visit was l week ago & I had the feeling he was trying to get rid of me or that I probably would not see him again.

Well, that answers everything.

He knew when I saw him that he was leaving &
never said one word.

The whole visit he was non-chalant.

I'll e-mail you.
Jan

Lisa

[This message has been edited by klcst (edited 30 August 2004).]
 

The doc klcst is talking about is Dr. Cowden. He is a miracle worker but quite expensive. He's who we saw during the samento study.

If you want Dr. M's (in Bedford) info. just e-mail me.

Good Luck and Take Care....Terri
 

What torques me off most is that at my last appointment after the "cutting back letter" I POINT BLANK asked him if he was leaving and should I be making other plans and he said NO.

I was one of his first patients and one of the first families he id'd as gestational and/or sexual transmission - you know his RESEARCH subjects!

I'm now on disability w/ forms due before long and don't know what will happen now. On my 3rd bottle of Mepron/Zith and @ our "next" appt (September 29 - 6 days after d-day so now no longer an appointment) he was going to probably start my husband on it too.

I can't believe this is happening. Just as I made a tiny little bit of progress - got kicked in the gut.

I can see "the other doc" in the office who I was originally seeing before the Lyme diagnosis and I like and trust her but, not sure how much she wants to deal w/ Lyme since CFS is her focal point. But, since I have that too - at least I'll have a place to go. Not sure if she'll accept the hubby though!

I've looked up the other docs in the letter and none are on my insurance. In the first letter he named Dr. G in Houston and he is on my ins but, can't call yet - not open.

Katie still goes to Dr. Jones and is doing about the same. This is all so frustrating. Maybe he'll see us all since we have to fly there anyway!!!

Good luck to you and call or email if you want/need too.

Sherry

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Joan
 

DO NOT mention him to the dr's on the orignial list given (i.e. Dr. G the ID doc on Fannin)....I called today, mentioned I was a former patient of Harvey's and needed an appt. They said "Oh, we've heard of THAT letter. We're not taking new patients."

I had my husband call right back, and he made an appt. for me!!!!! The only difference, was he didn't mention lyme or harvey.

Now, I just have to decide if I want to go to this ID duck.

I can't go to S, I never saw her to begin with. As for Dr. H in the same office, I have NO desire to EVER step foot into that HELLHOLE again....

I need a drink....
 

I called Dr. G's office this morning and was told they are taking no new patients. Didn't mention lyme or Harv or anything. Just asked.

I think Dr. S is taking new patients because they transferred me to the "new patient" rep to try to make an appt for my husband.

Are you going to try going to Austin w/ Norin? Just curious. Made an appt w/ my PCP for tomorrow - need new game plan!!!

I'd take a drink too - do ya think it's too early in the day???

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

 

I am SO sorry for you, KJ, and for all of his patients.

This leaves the Houston area, which is FULL of lyme, with no LLMD at all. Yes, there are a few "lyme friendly" docs, but there's a big difference between them and a true LLMD.

[This message has been edited by Sue vG (edited 30 August 2004).]
 

At this point I'm just glad I treated myself. Way cheaper and easier on the ol' psyche.

Hope you guys find somebody quick.

Charlie
 

No drink for me...Eli had PT this morning, and goes to the surgeon this afternoon to see if he needs abdominal surgery for his abdominal diastasis (long story.)

When I called, they only told me "no new patients" after I mentioned that I was a former patient of Harvey's...

When Brad called, they asked if he had a referal for an ID doc, and Brad just said that our pediatrician new the doc (true) and yes, his wife (me) needed one. They gave me my choice of two appts. on Sept 13th... No mention of lyme was made....I'm sure he'll hate us!!

Strange!

Again, not sure if I even want to go...maybe a fresh perspective would be good? I think I'll pay to have my medical recods given to me, and just take my pos. wb to the ID doc....I figure even he can't ignore that.

NP in Austin is great, but very into homopathic stuff, which I like, but can't afford...also, she disagrees with Jones on my children on a few issues, and now won't treat my oldest because of it, so it's kind of weird....

Maybe I'll just make a run for Mexio, get what I need, and deal with it...

All the drama! LOL
OH!!! I almost forgot!!! The phschiatrist listed: her practice has been full for a while now!!!! Harvey doesn't even really know these people! That really scares me....

 

I know what you mean about affording natural treatment. There is a doc here who is treating holistically and testing thru Bowen but, insurance won't cover and we can't afford the money or the chance of it messing up my disability. I guess I need to stay w/ mainstream for now anyway.

How is PT going? Katie hates it - she goes twice a week. She did better when she was younger but, as she gets older and knows EVERYTHING - she is not as cooperative!!

Take care and good luck!
Sherry

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Seems very odd that he would publish an important article, go foreign to give a lecture, and then suddenly quit. Is the state medical board causing trouble again?

[This message has been edited by lou (edited 30 August 2004).]
 

Dr. S in the same office originally diagnosed the Lyme for me and got me started on the right track. I will probably go back to her if I can get an appointment.

I was not unhappy with Dr. S in the beginning. I just switched to Dr. H after seeing him as a second opinion. Dr. S was not as aggressive towards treatment as Dr. Harvey was.

Any other opinions out there on Dr. S.?

quote:

---

Originally posted by BW Houston:

Any other opinions out there on Dr. S.?

[/B]

---

Hi BW,

Dr. S. has taken me farther than any other doc. She found the lyme, got me on thyroid, and introduced me to glutathione, which was helping me even before I had the lyme test.

I agree with you that she does tend to be conservative. The light touch is not a bad thing and is understandable when you consider how ill and weak the majority of her non-lyme patients are.

I've always thought that she and Dr. H. were complementary in the sense that he was the "warrior god" out killing the lyme monster, while she was the "healing goddess", providing supportive care for the ravaged bodies. I think both approaches are necessary in our fight against lyme.

I'm at a crossroads in my treatment and am seeing her tomorrow morning. I'll be interested to see where she wants to go from here. I wonder if she'll offer more aggressive options to patients she believes can handle them now that there is no one else around to do that.

Sue

[This message has been edited by Sue vG (edited 30 August 2004).]
 

Is your ND P.S.?
 

Hope ya'll are doing well!

I found the website for the doc in Lufkin but it doesn't mention Lyme treatment anywhere.

Just curious about that - maybe I'll call them!!!

Take Care,
Sherry

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

 

I just came off mepron and wanted to switch abx to ketek, and was hoping he would be in agreement with that. Last time I was there I gave him a research paper on Ketek for borrelia, which he never heard of.

We have seen Dr. G also early last year for a second opinion, although I don't think lyme is his first choice for practicing medicine he was very open to all I had to say given that I went into his office with a handful of research papers to back up everything I said.

Not sure who to go to next, Dr. G or Dr. S. My husband first saw Dr. S when he was initially bit in June 03. She is very short and does not discuss much with you. I want to get a new test done next month to see how we stand with the babesia, and am not sure if either Dr. S or Dr. G can run Igenex or Bowen tests.

I know Dr. H is trying to publish some findings he has had in treating a few other MDs that have been diagniosed with MS, and had actually had been infected with borrelia.
 

This brings back memories of when I traveled 2 hours to the Houston office's infusion center with my new central line only to learn that it no longer existed and that the infusion center people had been informed on a Friday that needn't report to work the following Monday because their contract had not been renewed. They were not allowed to contact or inform patients.

Honestly, I wish that office politics didn't affect patients so badly. I'm NOT stating that Dr. H is leaving due to office politics. It is my understanding that those two doctors enjoy a very good working relationship. I also suspect that Dr. S. will be quite capable of managing the patient load while we decide what we want to do.

In recent visits to that office I've heard some very encouraging comments about her treatment of LD patients while sitting in the waiting room during visits. Her CFS/FM patients have always spoken very highly of her warm and compassionate care. I guess I find the confidentiality and non-disclosure, & compete clauses (the track record suggests that's the case) to be unpleasant when one is on the receiving end. I prefer to feel informed.

While I don't yet know what I'm going to do, I'm deeply grateful that this disease has name and that I no longer worry that I will drop dead without ever knowing what it was that robbed me of so many years of my life. (I can remember the days when I thought that would happen and I still couldn't help but wonder if all that I was dealing with psychosomatic as so many others had suggested.) I'm also grateful for all the progress I've made and for the knowledge that even though I've had some serious setbacks here and there, I know that I can and will put this in remission for once and for all, with or without someone to help me.

KJ, you've got Dr. J and he is not going to let your family fall through the cracks. You are already an established patient with your pediatrician and you enjoy a level of hard earned trust. I'm sending you thoughts and prayers that your relationship there will grow even stronger. My guess is that although she doesn't feel that she can take on any new LD patients, she would not easily let your beautiful child go. With Dr. J's track record, I would imagine that she could continue to play a supportive role in your son's life. I also can't imagine Dr. P.S. leaving patients high and dry after her years of tireless dedication to the chronically ill.

I just can't imagine Dr. H abandoning us unless he had to for reasons greater than we can know. Thank you for sharing Dr. H's success treating MDs who suffer from MS.(This cloud needed a silver lining.) That will surely help our community. Perhaps he can do more for us with a pen or computer as his weapon. We need someone the other MDs will listen to and respect. Dr.H may be able to help our community and our doctors more by being the one to do that.

I guess it's time to feel blessed that we live in a state where we did not have just one Lyme friendly doctor. Our doctors still enjoy a level of freedom here when other LLMDS in other states are threatened. I guess I'm going to use some of my nervous energy about the situation to write some of the people that Ellen suggested a while back in her political action posts. I'm going to tell them how much adequate treatment has meant to me personally. I'm going to remind them that they have the power and responsibility to help end the suffering and to ensure that their constituents enjoy happy, healthy, productive lives.

[This message has been edited by Lonestartick (edited 30 August 2004).]
 

Charlie the Duke of URL
 

SandiB
 

In this *particular* case I think there were other factors.

I hope someone soon steps up to "replace" him.

Sue
 

Just a note.

Somebody said "HAVING lyme himself".... If this is true, how can everbody trash the guy, particualarly when they know what it is liked to be trashed themselves. How many are on disability here? why... because they can't work at any job let alone a job where if you screw up you can cause harm to someone else.

What its is like to work full time AND have Lyme... these guys are not supermen. they are just people like the rest of us and it sounds like a sick person at that.

If the statement of having lyme is not true, excuse my comments.

quote:

---

Originally posted by KJ:
he roped me in, acted like a savior, used me, became famous, and now has dropped me....what is this, high school???!!!

---

Sounds like one of my docs. He roped me in, said he believed my symptoms were real and not in my head. I saw him for 3 years. Then suddenly he decided to write a book about pain and suddenly he told me he could no longer do anything to help me. I read his book and discovered why. In his book he claims most of the type of symptoms I have, including pain, can be controlled by mental help! He has tried mental drugs on me of course they didn't work because my problem is not mental.

I feel like I've been lied to for 3 years! I wonder if all along he thought my problem was mental even tho he said it wasn't just to pacify me, and hoped he could use it in his book (his book talks about his real patients and their pain improvement on mental drugs), and when he found out I really was not a mental case after all, he decided he had no more use for me and dumped me.

 

Given the Lyme climate of late, perhaps he feels he can be of more service to us in another arena, hopefully getting word out to more doctors and improving the testing techniques. This would not be as risky as being shut down where he then could help nobody.

Yes, the way it was handled probably wasn't the best but we don't know the whole story. He went out on a limb FOR US several times, which brought much public attention to him. No doubt this plays a big part in his departure from being a treating physician.

It's very unfortunate that some are referring to him as "Steere-like"....he does not deserve that comparison, especially from people who don't even know what they're talking about. There is more to this than just Lyme, you must believe that something even more sinister is involved and I think that he made a choice as to where he could be the most useful.

The loss of your LLMD is a great one, I know, but from reading this thread there appears to be others who can possibly help those of you in the Houston area. I have no Lyme physician within 1000 miles of me, and I would give anything to have so many to choose from, true LLMD or not.

Please, let's give this man the benefit of the doubt until you know what really is happening. It serves no purpose to judge people when you don't have all the facts.

David,
Thank you for the timely reminder that we need to cut the guy some slack. He has already done so much for our community and I know in my heart that he would not abandon us without a very good reason. I also know that he will continue to do his best to continue to help us, even if he cannot serve us personally.

I am alive and WALKING around today because of him. That is not something I take lightly or will ever dismiss easily. He has given me a real shot at health and happiness and I'm going to make the best of it. He got me this far and I intend to go all the way. Failure is not an option

 

remember, you are not the norm...

I travel with my daughter (even when she was on oxygen and in a wheelchair) 10 hours to get to her physician - by plane. Its a long exhausting trip...but we make it work

For myself, I travel 5 hours by plane to see my LLMD.

This is the norm for anyone living in Oregon, Wa, Colorado, Idaho, Utah, Montana, Minnesota, N.Dakota, S. Dakota, Nevada and other states.

Your not so alone, you just had a really fortunate situation, which has changed now.

so, do your best to pick up pieces and move on.

 

I for one am going to use my energy constructively to insure that other patients' doctors are able to continue to help them.
 

We often forget that doctors are people too!! I know Dr. H never intended to treat as many folks as he ended up seeing. I think he stumbled into it and it had to be overwhelming. There are mitigating factors we know of and most likely some we don't.

I was thinking from a purely "me" standpoint because I have worked so hard to beat this sickness and regain some semblance of a life. I know things aren't usually as horrible as they first seem - it was just such a shock to get that letter on Saturday. Made me feel even more helpless!!

Thanks for the reality check !
Sherry

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

 

Also, I have known Dr. H for a long time. I was one of his first 17 patients. One of his first "lab rats," as we used to joke.

I watched at his siminars, as pictures of my rashes, and my child's rashes were flashed up on the screen, and cringed, but just kept telling myself "this if for the common good..."

I have watched this poor man take on more than he could handle...

But I have also watched him forget that I was pregant at six months (and I'm not overweight, so it was obvious) and forget to put me on actigaul when I was on IV Rocephin, which led to the loss of my gallbladder within one month. Both times, I just overlooked and thought of the "common good."

At the end, he was a different man. He told a friend of mine that he cured two of his children. He doesn't have any.

That, is just plain scary.

I love him, he taught me what was wrong with me, but when I relapsed, all of a suddend, I was like a love-child he wanted to get rid of-and fast.

All from a man that used to call on weekends to chat and check on me.

I'm sure there's a lot going on that no one knows about- he left A LOT of unanswered questions....

My beef with him, is his manner of leaving, and offering up other doctors as replacements without their permission, and that have no desire to treat lyme-including my children's pediatrician.

And as far as "enjoying having an LLMD so close while it lasted," we have no choice but to take our kids to Dr. Jones in CT as often as we can afford to go-which is not often enough. So, I know how incredibly blessed I was to have him here...it just feels like he kicked an ant pile, stirred things up, and for whatever reasons, walked off.

I'm glad some of us are well enough to go on and fight to get the treatment we need and deserve, but at this point, it's all I have in me to fight for my children.

Thanks for understanding.
 

We were already short of good docs, now there is one less. This scares people, understandably.

I agree with whoever said the way to respond is to support efforts to improve our lousy situation. This means contributing, raising awareness, supporting organizations, making political contacts, helping with the NY campaign, whatever you can manage.

If it were safe to treat chronic Lyme, then more docs would do it, would be open to furthering their Lyme education, and so on.