Hi everyone. Although I am new here, I am not new to Lyme. Been living with it since 2001 myself. Have never had a herx like this. It's all psychiatric along with the usual pains. Just started new meds. Thought I was going to need to be in a padded room for a while there. I'm thinking this is Bart that has been documented but I have never had "issues" with it. I know Bart and Lyme have similar symptoms but this is nuts! Anyone care to give info? Past experiances have always been typical Lyme stuff. HELP! Thanks!
Posted by nefferdun (Member # 20157) on :
Funny that I just did a search for bart herx and you had just posted your message! I had psychiatric symptoms when I started bart treatment - much more emotional with a feeling of being out of it and inability to concentrate. At one point I also thought I was just losing it. The first time I treated with Levaquin (which I could not continue because of tendonitis) and within hours I was on the floor hysterically crying over something on the news. I could be yanked equally as hard into the opposite direction, getting almost rageful.
I could not remember anything and it was impossible to concentrate or learn which just added to my depression and irritation. But after five weeks I was much better, lifting out of it and feeling more connected and motivated. My physical symptoms were almost completely gone too. No hot flashes, no headaches and no shin pain. Just my eyes remained a little sensitive.
I went on herbs that failed and had to start abx again this past fall. This time I have had the same emotional responses which have let up a lot since the beginning but I still cannot think and I am still depressed. My headaches are infrequent rather than every day, my shin pain is greatly diminished. But my eyes are worse, much worse, and so are the hot flashes. I don't know why. I have been on Rifampin and Zithro for over two months.
I am going to the doctor today. I want to try bactrim to see if it helps my cognition and then plaqueinil to see if it helps the mood swings and depression. As my doctor is not an LLMD and not much interested in lyme disease much less the coinfections, it is my responsibility to bring him my prescriptions to fill and even to inform him of the tests I need. I feel overwhelmed as I can't figure anything out any more so I drive myself crazy. It is like trying to make sense out of a dream and knowing if I don't come up with the right solution I will be like this forever.
Posted by Pippey (Member # 24059) on :
Hi Nefferdun, Sounds like you need a LLMD asap! Is there no one in your area? Guess it's a god thing your doctor is helping out but you really need a more informed doc. You will go nuts trying to handle this on your own. What, when and where did you originally test and what for? The memory stuff is so typical for all of us lymies. My brain scans show my brain is loaded with Lyme. I was on different meds until I found "the one" to treat the Lyme. It worked great for a long time. I went off all meds for a year and then got slammed again last May. This is different some how. I tested positive for Bart. but have always treated the Lyme (along with the Bart to some extreme b/c they are hand in hand)WHAT'S UP with this shin thing? I get intermittant pains in my shins like someone slammed me with a baseball bat! It comes and goes and man, does it hurt! I just started 10 days ago in new treatment on Tindamax. I think depression with Lyme goes hand in hand if for no other reason than it stinks to have this disease. BUT, it can be an organic depression brought on by the disease itself. I was in a good place in life and got hit out of nowhere with depression for no reason. (Yeah, sure I have reasons now but I'll fight them!) That was years ago. But this..it seems like it MUST be the treatment. I don't normally go off on people, perfect strangers but I have. I have been filled with emotions that range from anger to anxiety to absolute rage for no reason. Called my doc, said go to ER. Can't do that, they'll lock me up and throw away the key. What hospital anywhere understands long term treatment never mind I was injured 5 years ago and am on a pain management program that is very monitored. Bottom line, I hate taking medication for anything. I have taken almost all Lyme meds at one time or another including 6 months IV years ago. I just want to get a handle on this and can't find information anywhere to guide me. Local bookstores have more books on wedding planners than Lyme or associated infections. I'm in CONNECTICUT where this mess began! Ironic huh? People have no clue here of what lies outside their doors. Have done what I can to educate but people don't seem to listen until they experience it themselves. Then, it's too late for the most part. Good luck today. I know you are a long way from the the East Coast but there must be a LLMD somewhere near by. Hang in there. Let me know if I can offer anything to help. In the meantime, I'll keep searching for info on Bart. The more we know the better off we are. Then again, it's hard to REMEMBER what you learn! Thanks for the help.
Posted by 17hens (Member # 23747) on :
i had lyme that never completely resolved and now i'm thinking i have bart too.
among other symptoms (mostly fatigue and neurological), i also have shin problems - i feel like i'm getting a shin cramp. and then it spreads down into my heel which feels like a giant bruise and hurts to walk. although some hours of some days there's no pain.
i've been looking up bart info and found out about a book called, "The Diagnosis, Treatment and Prevention of Bartonella: Atypical Bartonella Treatment Failures and 40 Hypothetical Physical Exam Findings" (the color version) that seems to be full of info and important treatment info. Has anyone heard of it? Would you recommend it?
[ 01-18-2010, 01:27 PM: Message edited by: sixgoofykids ]
Posted by txgirl09 (Member # 21612) on :
17hens, I have not heard of this book but I would love some input on it too.
Posted by Elaine G (Member # 20735) on :
I have this book. I bought it on Amazon from seller: jjcustomerservice
Part 1, color edition, new book is $49.75 plus $ 3.99 shipping.
There are two parts to this book. Part 1 is probably all you would need. Part 2 has a lot of additional photos. There are plenty of photos in part 1.
I have most of his books. I refer to his Babesia book as my bible, that's my favorite.
[ 01-18-2010, 05:21 PM: Message edited by: Elaine G ]
Posted by canefan17 (Member # 22149) on :
What would clarythromicin + Amoxcicillan treat?
When i was getting sick with Lyme (before I knew what it was)....
I was given this for H Pylori.
OMG I herxed so bad (didn't know what a herx was back then)
Hallucinations, music OCD in bed trying to sleep, depression, weight loss.
The herx didn't start until day 4 of treatment. It hit me like a freakin truck and lasted for 1 week.
I eventually had to stop the meds because I thought I was overdosing??? haha
Looking back I'm curious what I was hitting.
Who ever really knows?
Posted by Elaine G (Member # 20735) on :
Cane I wish I could help you. I've only been under treatment for 7 months, coming up on Jan 26th, so I don't have many answers.
I've been sick for 12 years, the usual mis-diagnosis, CEBV, HHV-6 and CFS. The last 3 weeks I can see such a difference in cognitive, and energy that I feel like I have finally had a breakthrough with my treatment.
I don't answer a lot of posts because I don't have the experience and answers and if I have a question, I usually email my doctor.
I'm sure someone with a lot more experience with TBD could offer you some opinions. You many want to start a separate post on your question, it sounds interesting.
Posted by 17hens (Member # 23747) on :
so Elaine... the author, is your doctor? He's a good guy and knows what he's talking about? I read that he's done a lot of research and disagrees with Burrascano on Bart treatment. Do you have lyme and/or bart? And he's helping you? I just want to know if he's good...
Any info would be great. I want so badly to find out that he's good and knows what he's doing. Then I will buy his book and find out how I need to attack this stuff. Since I got sick in April, I've basically had to figure things out on my own as no doctor around here seems to know anything. And if they do, they're not taking patients.
thanks for the book link with an affordable price!
[ 01-18-2010, 01:29 PM: Message edited by: sixgoofykids ]
Posted by Elaine G (Member # 20735) on :
Yes, yes and Yes.
After almost 7 months of treatment, I would not change doctors.
I had my doubts around the 3rd month, especially after all the Herxes and confusion problems on my part. I am so happy that I have continued my treatment with him. Now, with brain fog lifting, I can see where I created my own problems. I wonder sometimes, how LLMD's can cope and tolerate TBD patients. Especially those with Bartonella that have anger and rage.
I really think he is brillant, my opinion.
He is an aquired taste. He is very eccentric, he lives, eats and breaths Tick Borne Disease. He will not leave any stone unturned. But, that's the kind of person I want to treat me.
He is a researcher and treats only one day a week. I don't know how other doctors that treat everyday have time to research the latest studies and papers that are released on TBD's and related illness.
His is not for everyone. He is expensive (but worth it in my opinion) does not take insurance (like most LLMD's).
I have heard people say negative things about him after one visit and they have done nothing but complain about how much they spent and how their budget was gone by the one visit. If you are on a budget or finances are tight he is not the doctor to see. He doesn't have that magic pill to make you well in one visit, it takes time as with any treatment of TBD's. Sometimes, I wonder if it is the Bartonella talking that make some people so negative and hateful.
I have Lyme, Babesia and Bartonella. My husband is also being treated for TBD's. Our grown son will be the next to be tested.
I have had over 80 tests done on initial testing. 44 viles of blood. Like I said he doesn't leave any stone unturned.
I would mortgage my home, take out a loan, I would do anything to keep him as my doctor.
I can see a big difference already, especially in cognitive, balance and more energy. Less aches and pains. I don't get the horribe fatigue, unless I have a herx.
The best thing I ever did was to move from New Jersey to Florida and find this brilliant researcher/doctor.
Sorry for gushing on but when you see a difference in your health in such short period of time, after being sick for so long.......... I think I'm allowed.
Posted by nefferdun (Member # 20157) on :
Elaine, can you share what your treatment has been? I realize it is giving away a secret you paid thousands of dollars for but many people cannot afford his consultation fee.
He does hint at a few things that might help like HH capsules taken "in extremely high doses". I corresponded with one of his patients and found out how much to take which was 20-25 capsules a day but it did not work for me. Just made me broke.
I think the pictures in his book are a good idea but they are very difficult to see being blurry and black and white. Still you can probably diagnose yourself as conclusively having bart if you see the various manifestations of the disease on your body. Since the tests are so inconclusive it is logical to look elsewhere to diagnose it.
[ 01-18-2010, 01:33 PM: Message edited by: sixgoofykids ]
Posted by Cheryl (Member # 75) on :
Hi,
I'm surprised that a doctor is being named in this thread as I thought we aren't supposed to use Dr. names on this board? Anyway, there are some very good doctors treating tick-borne illnesses.
Cheryl
sixgoofykids -Good point. We also do not talk about cost or say negative things about LLMD's on the board. Thank you for bringing this up. In the future, please report the post. The only reason the doctor's name was here is because moderators had not seen the post. We cannot read every post on the board.
[ 01-18-2010, 01:35 PM: Message edited by: sixgoofykids ]
Posted by nefferdun (Member # 20157) on :
I don't think we are supposed to talk about LLMD's so that we do not put them at risk but we can discuss the authors of books. We can also mention Burrascano's treatment protocol which is offered on the home page of this site even though he is a LLMD. I do believe we should be able to discuss books as well as those that are actively soliciting on the internet and are obviously not worried about their names being discovered. My only contact with you know who was brought about through an internet site as he pops up when you google bartonella. On the site I was linked to, there was an add promising a free five minute "consultation". I was never referred to this doctor through ILADS or anyone else.
Posted by 17hens (Member # 23747) on :
Oops, sorry. I started out asking about an author and ended up asking about a doctor. I apologize. I wasn't thinking, I guess. Completely my mistake. Can the name be erased the name from the messages?
Posted by 17hens (Member # 23747) on :
There, I figured out how to edit my post! Again, my apologies! I don't mean to get anyone in trouble or get anyone annoyed. I'm just searching for answers.
Posted by Elaine G (Member # 20735) on :
Hi, Nefferdun,
I have no secret to share with you with my treatmemt plan. What works for me, probably would not work for you. My treatment plan was tailored to fit me by my test results, symptom list and clinical observation.
My husband's treatment is different than mine and was based on his symptom list, test results and clinical observation. His symptoms are different from mine. His test results different, as well as, obvious body markings.
I know of another person being treated and again her treatment plan is totally different than mine or my husband's. I also so know her symptoms are different from mine.
The point I am trying to make, is there is no one size fits all in TBD treatment. There is no magic pill that we can all take and make us well.
Your treatment should be based on your symptoms, your test results and clinical observation by an LLMD.
I think what Dr. B has done with his guidelines is wonderful. But then again, remember, it is a guideline that what combinations of abx could work. Look at his symptom list. I would think most LLMD's would use his list or one similar before even seeing a patient. It is a really a good list.
Dr. S has never insisted that you consult directly with him for treatment advise. Yes, his information is in his books for those who want to contact him and yes he has websites with loads of free information. But, many LLMD's have websites today and some are even writing books, which I think is great. Anything that educates the TBD community is a plus.
The black and white Bartonella book was his first one to come out. The color edition came out in 2008 and is a lot easier to see examples in the photos. All his extensive research IS in the book. Were you expecting to read about a magic potion that would make you well? No you will not find that in this book or any other TBD book. Yet, this book is full of useful and good information. So maybe it wasn't what you were seeking but others may gain some insight by reading this book.
He writes books to educate the TBD community and not to make money. He funds his own books and has lost money on his books. Why would he write if he isn't making money on his books and taking money from his pocket to cover the expenses? Education.
If there is anything that you get out of his Bartonella book it is:
quote:Short treatments are always going to lead to a Bartonella relapse even if they stun the organism
As far as you taking advise from one of his patients, that may be or may not be his patient, that is totally foolish and dangerous to your health. The amount of HH that was said to be taken is an astronomically high amount of HH.
There is no secret answer but only tailored treatment for each specific individual.
I've read some of your posts and you seem like an intelligent person who has done a lot of research. However, by now you should know that what works for one person doesn' work for another. You cannot get well on self treatment.
Please go an LLMD even if you have to go out of state. There are some who take insurance. If you don't have the money, beg and borrow. Once you are better, you can always pay it back.
The only way you will get better is to get a treatment plan tailored to you. And.....give the LLMD a chance, it doesn't happen over night.
I have seen wonderful changes in 7 months of treatment. I still have a long way to go but I'm taking each day as it comes.
I will defend my doctor to my dying day because I haven't felt this well in 12 years.
[ 01-18-2010, 05:29 PM: Message edited by: Elaine G ]
Posted by Elaine G (Member # 20735) on :
Thanks Hen, you learn fast. Now, I have to review my post to make sure I didn't use his name Posted by Elaine G (Member # 20735) on :
Hens, you are in Harrisburg, PA ??? There are many LLMD's in and around your area and adjoining states.
Please don't try to figure out your treatment plan yourself. Make an appointment with an LLMD. Get on cancellation lists. Call more than one LLMD.
Self treatment is not the way to go. Books are helpful and educational but they can't make you well.
This is coming from my heart to encourage you to seek a qualified physician who is Lyme Literate.
Posted by 17hens (Member # 23747) on :
Elaine, thanks so much for all your insight.
Yes, I live in Harrisburg, PA. I am the 6th person that I know of, on my street (of 10 homes) who's had lyme. My daughter was the first, back in 2003 when she was in 1st grade. And not one of us have had a doctor who believed we had lyme, except for my daughter (after being sick for 3 months, she woke up with 13 bull's eyes so they HAD to believe!). Even to those of us with rashes, they've all said, "lyme is so rare here, I think you have lupus..."
I found my tick and rash this past April. I saw my family doctor first and when he saw my red backed black legged female deer tick in a little baggie he told me she was too big to be a deer tick. My test came back negative and he then wrote me a scrip for 3 weeks of doxy and made me sign a paper saying I wouldn't come back to him if I didn't feel better after that. Whatta... no one could pay me to go back to him! (What I wouldn't give to get a positive test some day and super glue it onto his front door.)
I felt better, but still had 3 remaining symptoms, and w/in 4 weeks became very sick again.
Next I saw my gyno for a small lump in my armpit. We ended up talking lyme and he said he gets it every year and never treats himself less than 6-8 weeks. he wrote me a scrip for 8 weeks of doxy but said since he knew so little about lyme, he couldn't do more for me.
He recommended I see an ID doc, the best he knew, but when I called to make an appt., the ID doc wouldn't see me. Apparently lyme is not an infectious disease. Now I know it was a blessing he wouldn't see me.
While on the 5th week of that 2nd dose of Doxy, I saw an llmd in Philly. I tested negative for everything and he sent me on my way.
After finishing all my doxy, I still had 3 symptoms, the worst being debilitating fatigue. A lyme friend recommended her llmd in York, but he wasn't taking new patients. He had an NP taking the excess patients, but when I called she wasn't taking patients either.
I've had a terribly sore heel since July that had started like tendonitis in my calf and then moved down to my heel, with so much pain that I could barely walk. I've had that most days since July. Anyway, I went to a reputable Orthopedic since my mom kept telling me I had whatever it is when your arch falls and you need an insert (can't think of the name right now). He did nothing for me except make an appointment for me with a Rheumatologist.
In the meantime I called a doctor friend of mine and asked, no begged, him to help me. He saw me and wanted to hear what the Rheumatologist had to say so I kept that appt. The first thing out of the Rheum.'s mouth was, "If your tick was bigger than the dot from this pen, it wasn't a deer tick. If I thought all my patients who come to me with the same symptoms as you had lyme, blah, blah, blah."
So back to my friend the doc. He decided to put me on IV Ceftriaxin. I only got 6 days of it as the insurance company is putting up a fuss as I have not yet tested positive. That all happened over xmas and we are hoping they cover us, but we'll find out soon enough. Oh, for 8 days after the last IV treatment, I felt better than any day since April. And then it all started coming back. But it was awesome to feel good for a while. Hopeful, you know, and a wonderful respite. Like a Hawaii vacation But my friend doctor, an overworked family doc, doesn't really know what to do for me now. He's starting to think lupus too. Sheesh!
So in the meantime, I spoke with a lady at lymepa.org who said my symptoms sound like Bart which would explain why I'm not getting better. I've thought Bart since my heel started hurting back in July but since I tested negative by the llmd in philly (at a NJ lab)I thought that it must be negative. Niave me.
That great lady also recommended an LLMD a bit closer to me and I have an appointment on January 27!!! So I have renewed hope!!!
I've done some Bart research and have seen the weird marks on the man's hip, like fireworks shooting off. My daughter has had those marks for 5 years. And she has stretch marks between her thighs that now reach from her thighs to below her knees. They don't hurt her but she's really self conscious about them. So I'm taking pictures and showing them to the doc at my appt. on the 27th.
Very sorry for my long story (although it sure felt good to tell it) but all this to say, going it alone has not been my choice. I've been forced into this position. My desire is for a doctor to help me, to treat me, to lead me in this journey. If only you could look in the yellow pages for LLMD, but it's such a hush-hush thing. It takes time to find them. But I won't stop trying. I will find help and I will get better.
Thank you for your encouraging words. I'm so glad for you that you are starting to feel better!
Posted by sixgoofykids (Member # 11141) on :
I have heavily edited this thread. Please do not discuss doctor's names or costs. Please also do not talk negatively about LLMD's on the board.
Also, when you see a problem with a thread, please do not assume a moderator has seen it, rather assume we have not and report the post. All you have to do is click on the "report post" button at the bottom of the post.
This thread was never reported, rather I received an email telling me about it from a non-member. I'd rather hear it from one of you first.
Thanks.
Posted by Cheryl (Member # 75) on :
My mistake for duplicate!
Posted by Cheryl (Member # 75) on :
Ooops duplicate, sorry!
Posted by Cheryl (Member # 75) on :
I did not see any discussion in this thread of any "LLMD." Also, I made no mention of cost despite the comment that appears in the edit of my post.
It is not my job to know what needs moderating, but it did seem to me that proper steps were taken in that the member properly edited the post when alerted to the fact we don't mention doctor names here.
My above post was altered to sound like I could be referring to the doctor in this thread when I said there are good doctors, but I most certainly was not. Please do not edit my post in a way that alters the meaning of my post. Thank you.
***
PS. So sorry about the duplicate posts!!!
Posted by sixgoofykids (Member # 11141) on :
Cheryl, you said that there were names of doctors mentioned in the thread. It is everyone's job to report a post when a Lyme treating doctor's (I have no idea what your LLMD comment means) name is mentioned.
I do not believe that the editing makes it sound like you are recommending one doctor, you say there are many good doctors who treat Lyme Disease. I also don't believe that I implied you talked about cost merely that it was mentioned. However, there were things you mentioned that needed to be edited out.
I know no one likes to have their posts edited by a moderator and I do not like editing them as I always get criticized for how I did it. You all have no idea what goes on behind the scenes, so do not take the editing personally.
Posted by Elaine G (Member # 20735) on :
Six, You did a good job. I know several of us, including myself, strayed from the rules.
Glad you and the other moderators are here to remind us and thanks for cleaning up our mistakes.
We need to protect our LLMD's, there are not enough of them and we don't need to lose more.
Again thanks,
Elaine
Posted by David Miller (Member # 21583) on :
Surely we can mention the names of doctors who have published books and papers, such as Burrascanno?
I understand that's a different context from "Doctor X treated me with protocol Y and I thought that very (in)appropriate".
Posted by nefferdun (Member # 20157) on :
We need to stand up for each other because if we don't no one else will.
Posted by sixgoofykids (Member # 11141) on :
I have deleted a couple posts. I am also closing the thread.
I am sorry I cannot answer all your questions nefferdun. Our policy is that we don't allow negative talk about LLMD's on this site. We don't want detailed conversations about treatment and we don't talk about pricing. The rules don't change when the LLMD has written books or has their own website.
Also, David Miller, to keep consistency, we do not allow names of LLMD's on the board, even if they've written books.
![[Big Grin]](biggrin.gif)
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But my friend doctor, an overworked family doc, doesn't really know what to do for me now. He's starting to think lupus too. Sheesh!![[bonk]](graemlins/bonk.gif)