I saw my LLMD yesterday. He has basicaly issued me an ultimatiun (sp). He performs a procedure called "The Chysicon Protocol." I'm sure I've spelled that wrong...and to think I was a teacher!!!

It basicly means getting a central line for 12 weeks and him pumping 4 grams of Rocephin a day into me. I don't know anyone who's done it, but I've heard horror stories of how you feel. He said he had't heard those.

I have already had a line two years ago, where I did 2 grams for six months. Three days before it was to be yanked, I went septic. Since, I have been on 1 gram IM four days a week, and Flagyl the other 3.

I have a five year old, and an 11 month old, both with lyme, both in PT and both in leg braces....

I tried to tell him my concerns of who will take care of my kids (we have no family in town) and he went off, telling me "Almost all my patients have children with lyme, and you're the first to bring them up.) I asked him if he had children, and of course the answer was "no."

He started mentioning different doctors to me, and then said "I can keep you on pills the rest of your life, or you can do this treatment and get better." I got upset that he didn't get why my children were an issue, and he said "I think I'm seeing some bipolar behavior."

I wanted to tell him "No, you're seeing a mom getting PO'd at your lack of compassion."

Now, I have known this man for almost five years. I have seen a lot of shrinks in the past, and have never been told I was bipolar. It's like I don't fit into his research model where everyone is getting better, and he doesn't like it.

He is even insisting on treating me for Babesia, even though all tests (Bowen, IgeneX, MDL) are negative. He even criticized how Jones was treating my daughter's babesia, and yet he (my LLMD) won't see her, and HE's the one that sent me to him!!

I'm only 29, and have two children who have their own problems. I understand that if I'm not well, I can't take care of them, but he's going to kill me trying to cure me!

To all you moms, and anyone else, what would you do?

If my LLMD rejects me, where do I go?

I did a drug protocol just like the doctor
ordered, and it raised a lot of havoc with
me that I still haven't cleared. I am not
a physician nor do I presume to be one, but
I have learned what my body does under certain circumstances, how much it can take,
etc.

I don't understand his nonchalance at you
being a parent of such young children and
worrying about taking care of them in event
that you have an adverse reaction.

I couldn't believe it when I read your Post Topic. Then when I read the complete entry------ I knew who you were talking about. He told me I was bipolar because I was over-thinking everything.

When I left, I was in shock.

You've made me feel a lot better about myself today! Thanks.

Take Care,
Jan

Ask for help from your church, old friends, ask someone if they would come to stay with you IF you get sick, ask your 5 yo for her help and patience. Notice, I said IF.

I'm not sure what to make of the situation. I don't know if you will want to go back adn try any of these therapies or simply move on. I don't know your situation, so I can't really give you advice about it.

On the other hand, I can share my experiences, I did the Cichon protocol last summer after relapsing after pushing myself too hard all year. Because I didn't want to go the central line route, I did it using IM injections.

I did 1g Rocephin in lidocaine in each site for a total of 4 shots per day, 4 days in a row. I then did 3 days of Tinidazole. The first 6 hours were rough, but as I built up on it, I felt really good. The First day on = rough. By the last day of Tinidazole, I was always really ready for the Rocephin despite the first day being awful. In between, I felt very good.

If you choose to go this route, the line would probably be easiest. With IM injections, you really need to know how to do it in order not to get into trouble. The Rocephin is very caustic! Injections weren't so awful for me because I had studied nursing at one point before my health broke.

While it is possible to do this by IM injection, it is NOT recommended. You must rotate sites religously and use caution so that the medication does not leak into the subcutaneous tissues where it can form lumps and cysts that may become infected. I've heard of horror stories about people who have done this - one who ended up in the hospital.

As far as treating Babesia goes, I went this route, even though the only positive I ever had was from Bowen and I doubted their results at the time. I only did it because I knew of a couple of other patients who had not tested positive but who saw marked improvement following Mepron. When I finished the Mepron, my energy level reached new heights that I had never enjoyed before.

I think that these infections can mask one another. After I was treated with Mepron, we retested for co-infections and Igenex found Bartonella, despite a prior negative from MDL.

As many sore throats and swollen lymph nodes as I've had throughout my health history, I feel certain that it was not a new infection but was one that had been hiding while other things flared. I believe that one of the MDs (VS) has written about The Carousel of Infections. Her paper used to be on the ILADs website. You might read it. I found it very interesting.

On an interesting side note, I have seen pictures that a UK doctor filmed of spirochetes hatching. If he is correct in his observations, that very well could change how this disease is viewed and treated - perhaps that's why so many see results with Mepron.

I'm headed on vacation, so it will be a while before I can check back should you have any questions.

Wishing you peace and healing.

Yes, the doctor sounds like a jerk but he's offering aggressive IV abx.

My LLMD is well-known, and we have had an excellent rapore in the past, as I was one of his first patients four years ago...On an interesting note: He just sent a letter to all his patients saying that he wasn't taking any new ones, and would only see those of us who "weren't well yet" three days a week, so he could complete his research and get it out to the medical community. That's great, but it sure felt like a "use-me-and-lose-me" letter...I lost my gallbladder with my first line because he forgot to put me on actigal, for pete's sake!!! I overlooked it, trying to see the "bigger picture..."

He is tired, getting old, and overloaded with patients, and had lyme himself....maybe that excuses his behavior?

This is a guy that I used to look forward to going to see because he was the only one that ever understood....now, I dread it, and feel pressured and manipulated by him...it's as though the past four years of treatment, where I have followed his advice, mean nothing....

He said Chichon couldn't be done with IM shots....that's interesting that it can, as I have been giving myself IM shots for over a year...

He didn't suggest how my daughter should be treated, he just said that if she was still testing pos. for babesia after a total of over 7 months on Mepron (over 3 years) then they (Jones) were missing something. He also criticized that they have switched her from Mepron to the pill Malerone, as she is so sick of the "yellow paint" and it is so incredibly expensive. He said it would do nothing for her.

I asked him what to do, and he said "I haven't seen her, I can't say," to which I pointed out that for the past four years I have begged him to see her, even dragging her to my appt's, hoping he'd just glance her way. He even uses pics of her EM's in presentations! He said to take her to an NP in Austin, which I did, but she has now decided to treat "children 8 and older." My daughter just turned five. In my opinion, Jones got her well once before, he can do it again...not to mention my little Elijah, whose just 11 months...In this state, my LLMD would scare my daughter to death....Jones is so tender with them...

Just thinking and praying right now....obviously I want to get well, but I don't like being treated like an ignorant lyme brain...I expect that from other docs, but not my LLMD....I'm a former teacher, graduate of a private university, and sure, at this point my five year old can beat me at checkers, but I'm not stupid....just sick.

Thanks for letting me vent!
KJ

Check your e-mail--I sent you the name of another doctor in the area

It has helped significantly, however, the symptoms still return on a cyclical basis but are reducing in both severity and duration as treatment goes on. You can always stop if you have problems or it is not working.

For comparison, I was on IV 2gm/day for a month then folowed by very high dose oral combo's for a total of about 11 months during which time I relapsed badly. The second IV was the only resort and it appears to be working and the symptoms where no where as bad as the first IV.

It looks like the dose is body mass dependant and the 4 gm is selected to get the concentrations needed. My dosage is 2 gm every 12 hours, 4 days on 3 days off.

I miss seeing you old friend!

As usual.. I will offer my opinion... and in my old familiar way... blunt and to the point. Hold onto your hat!

Tell the guy to take a LONG walk off a short pier.

OR... Tell him to go fly a kite.

OR... Tell him to take a deep dip in apple butter.

He is wrong.

Bipolar, my butt.

It isn't you with a problem.. it's him.

I have seen Lyme invade doctor's brains in the past. It ain't pretty. It can get even nastier as time goes by.

This situation you are dealing with sounds very much like what is happening.. from your description. Brain invasion. Like a skunk or racoon.. once the rabies infection gets into the brain... flip flop personality and vile is commonly spewed for no reason.

I have actually had doctors who have Lyme SCREAM at me and others for no reason other than they have lost it mentally. RUN dear one.. RUN.

If things go the way I have seen this situation go before.. it will only get worse. Get out now while you can and spare yourself any more grief.

Find a new LLMD who considers YOUR best interest. We NEVER should depend on anyone who doesn't put a child's needs (or a mothers caring for her child's needs) FIRST!

And your little ones are counting on you.. so do right by them. Never deal with someone who demands you to do any different.

I know it hurts you to have this happen, especially after all this time and trust and working together. But this can and does happen to even the best of folks.. and this one sounds like he is loosing it.

Grrrrrrrr... I AM upset you were treated this way. No one, for NO reason, should have to take that garbage from anyone.. especially from a doctor.

By the way.. the ones I saw "lose it" also tried hard to kick other LLMD's and/or the LLMDs protocols on their way down... and also blamed the patients.

And anyone who knocks Dr. Jones... well.. in my book... they suck.

It is DUCK like to say that something isn't right but offer no suggestions on what IS right. HOW LAME! HOW SAD!

Now.... about the actual TREATMENT he suggests... now that I have kicked his attitude and manners across the state.

That much IV Rocephin would kill me. For some folks that CAN'T be done without serious harm.

My best advise.. If you have ANY doubts... don't do it.

You have "been there, done that". You know what you can and can't do. And you should NEVER be pushed into a corner to do it... or made to feel bad if you decide to not do it.

And I don't care how many others have gotten well doing it in the past... everyone is different.

Please watch those who go "off"... they sometimes are capable of "fixing" figures. Not saying at all that is what he is doing.. just do be aware.. figures are figures.. NOT people and their real feelings.

You said..

"It's like I don't fit into his research model where everyone is getting better, and he doesn't like it."

EXACTLY! You hit the nail on the head! I couldn't have said it better!

You said...

"He is even insisting on treating me for Babesia, even though all tests (Bowen, IgeneX, MDL) are negative."

I will say that I personally think the tests stink just as much for Babesiosis as they do for Lyme.

AND... Too many folks are suffering with different strains of Babesia we don't even have tests for .. something like 20 plus strains... so there is a possibility you do have it. It might be something to consider in the near future.

BUT.. It has to be a GOOD thing.. not a forced thing. His approach was horrible... and I wouldn't let him treat ME.

I will also say I have seen many folks be treated for Babesiosis who had negative tests and they made excellent improvements once that was addressed. I personally recommend getting treated if it is even suspected.. and sometimes when it isn't.

But.. we DON'T get forced into treatment.. and we DON'T accept ultimatiums. NEVER EVER!

And looky there... It is a rare day when Cave 76 acts like her britches are on fire.

But even she agrees he is NOT doing right by you and the children. That means something to me when she speaks out.

OK... let us know what you decide.

The above is only my opinion, by the way.

I hope you feel better soon... really I do.

1) Who takes care of the children while you work/school? Would they be capable or willing to help you out? Do you live next to any older/elderly woman who would like some attention and adore your children? Just a couple of thoughts.

2) If you have a printer, I would be sure and print out the horror stories you have read about and take them to your next visit.

I too have a 7yr old with symptoms and a Pos test and a 13 month old with an equivocal test showing some pos lyme bands.
None of us have been "diagnosed", but I am sure that we all have it, as we are traveling to MO at the end of Aug.

Don't bother with the printer, dear..... find ya anotha LLMD!!

I go to Dr. M here in Mobile. Many patients get along with him, but there are others that have a personality conflict.

I do think that there are patients who expect an LLMD to perform a miracle. They get treated for 6 months then get mad at the Dr. because they are not cured and/or They get treated, dont take their meds, and get mad at the Dr. because they are not cured.

Obviously this is not in your case. But still there is a conflict of personalities and goals here.

tincup couldn't have said it better...I completely agree...run, run as fast as you can from this man.

I know that changing doctors in the middle of the stream is not an easy thing to do, but, many of us have, and we are the better for it. I may seem as if you are starting over, but, basically, isn't that what you doctor now is prescribing?

For you to have been so sick on only 2 grams per day, then, I just couldn't imagine just how sick you'd be on 4 gms/daily.

Again, trust you instincts, but, you are already questioning it anyway, or you would not have written this concerned post. Now would you have? I believe that you'll soon see a very clear picture in you mind of just what you need to do for you and your children.

Best to you!!!

My view here is this....

Dr Crist had to coax me into a couple of treatments...because I was scared, too.

I DO feel that SOMETIMES we have to push our own limits to beat this.

Now...the difference here is my LLMD AALSO tells us to BACk away from heavy herxheimers...with his blessing.

He feels that the body can only take so much.

As to him saying people are bi-polar...we all have a pet phrase we say when frustrated...he is human also.

BUT>>>>>> I feel it is TIME for a change.

However, you may want to consider increasing your dosage...he may be thinking that you are only keeping the keets at bay, and at the current levels won't beat them...got frustrated with you for not seeing the whole picture and "lost" his temper with you.

HOWEVER...I still feel you need to change...

you have lost confidence in the man.

I agree with what TC and the others said...BUT, just keep the flip side in mind on this...

it may be time to change...LLMD's and Protocols...

If you never get better...who will tend to the children later?

(I have 2 girls with Lyme and my wife was dx'd with 3rd stage breast cancer last fall...I NEVER stopped my protocol...if we keep finding excuses to stop our protocol growth...we will be stagnant and are doing NO ONE any good.)

Trout

TC...good to hear from you!!!

The longer time goes by since this visit, the angrier I am getting....

I have never questioned this man. I have done what he asked, despite feeling horrible, losing my gallbladder, and going septic (there's an old post on here somewhere that I wrote on morphine from the hospital...I seem to remember it being very entertaining!! =).

I was a writer before getting sick. My juices are about to flow again, and right in his direction. I am going to tell him the change I have seen, and that the very thing that drew me to him, is now gone, and he is treating me no better than the doctors before him.

I forgot to mention....visit before last, the first time he tried to talk me into a second line and I brought up my children, he threw out the word "bipolar." When I went to check out, he had written it under "Diagnosis" after lyme, with a question mark by it. Before I signed it, I scratched it out!!! Maybe that's a bipolar thing to do, but by golly, no one's going to give me that diagnosis except a good shrink.

Still thinking a praying...

As for others to watch my children, there's no one. We usually take turns with friends, but they all have there own families and problems...my mother comes about once every six weeks from Dallas, but in between, it's just me, the kids, and that wonderful thing called Hydrocodone...=(

Before, we had a great church family...we are in between churches right now...it's hard to find one when you can't go every Sunday...

Blessings,
Kristin

I am starting on Mepron tonight..figured it couldn't hurt, and might clear a few things up....

This guy is not a physician any longer, he's a duck doctor...He is NOT qualified to diagnose you as bipolor nor should any compassionate person throw that diagnosis around like a threat. That is cruel and irresponsible, period!

As to babesia. there are several strains for which there are no blood tests. There are strains that we haven't even named yet. WA1 didn't exist til a few years ago, now there is one lab, the Sonoma County Health Department, which is licensed to perform the test for it. Igenex sends it's WA1 tests to them.

Dr. Harris at Igenex will tell you that the babesia tests are only so accurate. Dr. S in San Francisco and Dr. H near here diagnose based on symptoms and presentation, rather than relying only on serology.

Mepron isn't always the answer as well. I was on it for 9 months, titre stayed high for WA1. Then six months of biaxin and flagyl, titres went down by half..then high dose of Lariam all in one day followed by one tablet weekly did the trick. It ain't a pretty therapy, but it worked.

Now I am reinfected, new bite last summer, with lyme and babesia WA1 again. We started with high dose Lariam, and it did absolutely nothing. Rats! Now we're on zithromax and flagyl. I don't know what the latest blood work shows, but I am feeling much better, babesia symptom wise.

Dr. S says that he has several recalcitrant babesia patients...well their babesia is recalcitrant, not the patients. He says that they take longer to treat and require changing therapies a few times, but the babesia relents in the end.

We call Mepron Dragon Snot at my house...It helps to make it something other than tempra paint...I hate the stuff too.

We found out last month that I have celiac disease and I do not absorb fats properly...well, Mepron requires fats to be absorbed, so all that Dragon Snot and cost was for naught....!!!! Who would have thunk it?!

I am deeply sorry that you doctor has become a jerk. I am a single mom..and was sickest when there was no one in my life other than my two terrific children..my family is all on the other coast. Any doctor who does not respect the mom side of your life is a twit! It's an integral part of who you are all the time, not a part time job that you can quit...It's part of your heart.

I haven't been online on Lymenet much lately and just read your post a minute ago. I am really sorry you are going through this with our LLMD. I have had great results with his treatment protocol. I can't say I'm cured from Lyme but can assertively say that I'm pretty close to it. My symptoms are practically gone!

Anyway, my point to all this is that I am doing a lot better THANKS to you! When I was lost - you helped me - and you aided me to find a doctor. You even opened up your home for me three summers ago. I am very thankful to you and your family, KJ. If you need me close by, I will flee to Houston for a month or two to help out around the house and with your kids. I am serious, Kj! Consider it. It will be my opportunity to give thanks to you and your family. I have work and course engagements for the next couple of months, but let me know when you'd need me and I'll try my best to be there for you.

Yes, dump the guy if need be. What a shame! I guess he needs to go back on abx himself!

YES, try the mepron! BTW, clindamycin and quinine work very well and are really cheap. You can also do clindamycin/plaquenil.

I would be willing to bet that you have babesia. Clearing it will make all the difference in the world!

Stella, that is a wonderful thing to offer.....I know you are quite serious!

gotta run!

Hang in there, KJ! You'll win!

Been there-done that with the same guy--yes-know who you are talking about.

Got the smae Cytokon protocol. My gut said no ! no!--ran it by every dr. I see and a very excellent old time Lyme person. They all said it was insanity.

I didn't do it--so glad---seeing another LLMD.

Your insticts are right on. You will find someone else---this board will help you.

Best of care-

Are you trying to make me cry?!!?

Just hearing that you are better makes me feel wonderful....

You are so young....you've missed out on so much because of this disease, and to think you'd stop and come help me?!

I love you!!!!

Go keep woking, and enjoying your early 20's, before you turn into me =) haha

In other words, thank you, but when push comes to shove, I know we can survive....

Have fun, and keep me posted so I can live vicariously through you!!!

I'll e-mail you.

Hugs,

quote:

---

Originally posted by treepatrol:
Iam wondering if by some means your Dr has gotten infected because he's beginning to act like it??? Iam not kidding.

---

Don't know if any of us can ever say "had" Lyme.

Where did my post on this topic go--Since I have seen the doc in question, I felt like I hadto back her up..

Who are the elitest who can eliminate other's responses ?

Guess I should check with the powers that be---Pisses me off.

Your post is above....

You may not be able to see it.. but I can. Check in later. Sometimes it takes a while for a post to show up.. especially when the board is busy.

Good to see you!

Your doc sure sounds a bit bi-polar to me!

I think you've gotten good advice - "vote" with your feet.

You are a young woman of great character! Women like you are what we need in this world..
Way to go!

Carol Ann