It is my hope to use this single thread as a journal of my son Greg's journey through Lyme treatment. I am doing this for him (in the hopes that others may suggest things I have not thought of). I am doing this for me, his mother, in the hopes that others may encourage and inspire me).
But I am also doing this for others--those newly diagnosed individuals and their families who might find sustenance by reading about our journey.
One of the reasons I think my journaling here may be useful to others is that I am a former RN and a currently practicing physician in the area of psychiatry. I'm bilingual: I speak NURSE and DOCTOR.
Also...perhaps because of my dual professional worldviews....I have, over the years, cultivated a deep interest in herbalism and complementary medicine. In what factors aid in healing.
Finally, we are just at the very beginning our journey, as Greg's diagnosis was made just one week ago.
Without further ado, let me introduce my beautiful son, Greg.
Greg is a 20-year-old young man who was diagnosed with high-functioning autism at the age of 3. He required a 12:1:1 self-contained special ed classroom through elementary school. He had a 1:1 aide through middle school, and just resource room assistance in high school. He graduated with New York Regents' Diploma and went to community college for two years, when illness forced him out of school and unable to work.
Greg had his first psychiatric difficulties with phobia and anxiety at age 8. At age 10, he was prescribed Zoloft (sertraline) for anxiety and depression. In high school, he exhibited periods of agitation and depression that were diagnosed as bipolar disorder, mixed, and for which he was ultimately prescribed Tegretol (carbemazapine), Lamictal (lamotrigine), lithium, Klonopin (clonazepam) and Abilify (aripiprazole) along with his sertraline. Onefrom almost every column on the Psychiatric Menu.
Because Greg had high-functioning autism, he got teased a lot by his classmates beginning in elementary school. He spent a lot of time by himself in the woods near our home in upstate NY. The woods soothed him.
He never had a rash----or I didn't notice.
There is a family history of bipolar disorder and anxiety disorder on his dad's side. So when he began manifesting his anxiety and periodic episodes of agitation, it was easy to see it as a "functional" psychiatric illness. Neither his treating psychiatrist nor I thought there might be anything else to account for his problems.
For the past two years, however, I have been seeing Greg as more and more "organic"---a term we psychiatrists use to refer to emotional, cognitive, or psychiatric symptoms that are shown to have underlying physical cause, such as temporal lobe epilepsy, or drug intoxication, or traumatic brain injury.
Specifically, with my son, I saw him just become more and more confused. He stopped being able to drive because he got so anxious and couldn't follow traffic patterns. He began to have difficulty following even simple directions. He would have full blown panic attacks and have to lie down in the middle of the road in order not to faint. Still, we just kept on medicating.
A couple of months ago, prior to his Lyme diagnosis, I remember thinking, "Something is taking over my child's brain." I thought it was the effects of chronic psychiatric illness coupled with poor diet, and the effects of so much medication on his body. I began to despair, knowing I was going to lose my child to this progressive deterioration, and feeling helpless to stop it.
A few weeks ago, a dear friend of mine was diagnosed with Lyme Disease after having to fight her primary care doc to get tested. Some of the things she said about how she felt rang a bell for me---things like, "I feel safer at home." "I just don't feel right in my head." Those kinds of things. I'd heard Greg say those things many, many times.
Greg was due for his regular lab battery---liver function, thyroid testing,etc. I asked his treating psychiatrist to include a Lyme test.
I almost hit the floor when I got the results. His Elisa was positive. Follow-up Western Blot revealed IgG bands at 18, 23, 28, 30, 39, 41, 58, and 93. IgM bands were absent. This is an old, old infection. I would venture to say he contracted Lyme sometime before junior year in high---at least four years ago, maybe more.
In the past week, I have been reading like crazy. I get the issues separating the ID people from the LLMDs.
I'm a mainstream doctor. I've been in practice for 25 years. I knew almost literally nothing about Lyme other than it's a spirochete infection resulting from a tick bite and sometimes showing a bulls-eye rash and can result in arthritis. That's it. Sheesh, I'm embarrassed by that.
I have found a complementary medicine practice that treats a lot of Lyme patients. My friend is getting well with their care. We are starting out there.
My son's treatment is complicated by the psychiatric meds he is on. The Tegretol is especially difficult as it induces the metabolism of so many meds, making them ineffective. Doxycycline is one of those those---if we gave Greg doxy, his blood levels would be too low. So his first antibiotic is amoxicillin, 1000mg. by mouth three times a day, along with probenecid.
My son, who has suffered so much for so long, is now willing to follow his mother's suggestions for "wellness support" that I have been making forever. (My herbalist, CAM hat, mother hat)
So in addiition to the antibiotics, Greg is taking K-Pax nutritional support powder and lots of probiotics in smoothies that I make for him twice a day. He is taking Para-Gard, an herbal "antibiotic."
At my urging, he is now gluten-free, because of the antigenic properties of gluten. He is avoiding sugar most grains. He loves starches, so he's agreed to stick to small amounts of white rice, sweet potatoes, and green plantains. We already only eat animal foods that come from organic, pastured animal sources and 'clean' fish.
I've explained to Greg that his disease is kind of like the old days in the treatment of tuberculous. In the old days, people who could afford it went to sanitariums high in the clean air of the mountains. They sat in the sunshine (vit. D!) and were given cod liver oil and raw milk and tons of vegetables. They got fresh air and rest and gentle exercise. They were given the conditions under which their bodies could heal, and nature did the rest.
I explained to him that we are going to get him better with a three-pronged approach. 1.The appropriate antibiotics at the appropriate doses for the appropriate amounts of time to kill the organism responsible for the infection.
2. We are going to create for him our own "sanitarium." He is going to rest, gentle exercise (like walking) when he is up to it, lots of sunshine and fresh air. Nutrient dense foods: bone broths, lacto-fermented veggies, good healthy fats with an abundance of omega 3s to build up brain cells, fish, eggs, dark leafy greens. Lots of soups made with veggies and that bone broth. Warm baths at night with Epsom salts for the magnesium. Immune-boosting and liver support herbal preparations like chamomile, peppermint, hawthorne berry, dandelions, milk thistle. (I believe in whole plants over concentrated isolated substances.) Probiotics--the one exception to the last idea----concentrated. Given in between antibiotic doses.
3. Visualization. As with cancer, the right kind of visualization is a powerful healing adjunct. Working with Greg, we've come up with the image of Mario (from the video game) smashing the spirochetes on their corkcrew heads with a shovel, and having them burst into specks of pixie dust and disappearing. (In cancer visualization research, too violent an image activates the fight-or-flight reaction, increases cortisol and decreases effective immune response. Images that evoke a smile, a sense of fun or of peace, are more effective.)
Greg began his amoxicillin regimen on Wednesday, March 2. Yesterday, after 72 hours on antibiotics, he had his first Herx reaction. He came to the dinner table last night extremely confused and barely able to grasp his drinking glass. It passed in about 20 minutes.
I plan to update this thread and journal with Greg's treatment and progress. It is my fervent wish that one day, I will be able to write that my son has his life back, that he is healthy and well. And that this record will stand for hope for others to follow.
Warm best wishes to all Lyme sufferers and their families for peace and healing.
Sincerely, Susie
Posted by MADDOG (Member # 18) on :
Hi Susie R Welcome to the lyme net.There are lots of people here who have a lot of good information.
I hope Greg responds to treatment fast and feels a lot better soon.
What you said about fresh air and gentle exercise is very true.
I feel much better when high up in the rocky mountains ,like 12000 feet.Up in the Snowy Mountain Range above Laramie Wyoming.
The air there is free of polution and the water is clean.
I am trying to build a new truck to take me back there this year that gets like 45 MPG.
Thank you Susie. For many reasons. for caring for your son as only a mother can.
for sharing this journey with us and for dedicating yourself to learning to treat this horrible illness.
my best to Greg and to you as well.
ff
Posted by momindeep (Member # 7618) on :
Hello Susie,
I do envy you...it was a huge regret of mine that I wasn't educated well enough to handle this illness for my daughter...I told her if I knew what was coming down the pipe I would of become a doctor so I would have learned some of the medical knowledge and insight needed to wade through this disease. Sigh...
Thanks for letting us into your life...telling us your plan of attack and why you are making the choices you are.
Your son is fortunate to have you as his mother, I am sure Greg is a blessing to you, too.
Sue
Posted by seibertneurolyme (Member # 6416) on :
Susie,
Welcome. Sorry your son is sick, but you have found a new home.
I think you are on target with combining herbs and antibiotics. And the diet seems reasonable. But if G.I. issues are a concern it might also be a good idea to test for a casein and/or lactose intolerance as well. Either DiagnosTechs (the complete G.I. panel) or Great Plains Laboratory offer reliable tests in my opinion.
You were very fortunate to get a positive test result. But what you did not share were your coinfection tests. It is very unusual to only have lyme disease and not to have at least one coinfection. And frequently the coinfections require different meds or herbs than the lyme.
Bartonella or BLO (Bartonella like organism) and babesia are probably the two most common coinfections. Others include ehrlichia or anaplasmosis and rocky mountain spotted fever and tularemia. This is by no means a complete list.
Also viral issues may be present.
Another common issue is G.I. parasites -- especially common with weakened immune systems and coinfections such as bartonella which may hang out in the stomach.
I have read that the symptom of getting lost is related to a deficiency of acetylcholine. Both lyme and babesia rob the choline from the body. Lecithin is a cheap source and of course eggs are good (you absorb either 3 or 5 times as much choline if you eat only the yolks -- forget exactly what the PhD told hubby).
A brain SPECT scan would be a good idea to document the amount of neuro involvement. Columbia Presbyterian in New York City is one of the best sites. They can tell based on the location and pattern of hypoperfusion if lyme or vasculitis is an issue. Can rule out depression or anxiety or alzheimers for example as causes of brain dysfunction. Have read that this test is abnormal in 70% of tickborne patients.
Be sure to include s boularrdi in the probiotic mix. Will help to prevent c difficile.
It might be a good idea to add baking soda to the epsom salts bath. Hubby does better with the combo than with just straight epsom salts. Start slow because if you are deficient in magnesium the bath could cause an adverse reaction as it will activate various enzymes and detox pathways.
Hubby also adds potasium salt substitute and powdered mustard to his baths.
The visualization sounds good in theory, but when hubby was his sickest he tried this to stop his Parkinsonian tremor (attributed to anxiety or depression by many neuros). He is a very visual person and could actually relax for a few minutes, but the longer he stayed still and tried to concentrate the worse the symptoms rebounded.
Once his hyperaccusis resolved music has been of much more benefit than visualization. Hemi-sync is a company which makes relaxtion tapes he has found helpful. At one point he would just turn on his CPAP machine for the white noise -- drove me crazy but he found it helpful.
We eventually after several years realized that a lot of his problem was a genetic methylation issue and also a serotonin deficiency due to the brain infections. In the presence of brain inflammation the body converts serotonin by an alternate pathway to the neurotoxin quinolinic acid. Resveratrol (specifically japanese knotweed source) blocks this pathway. That is one of the biggest insights we gained from the Buhner Healing Lyme book.
Hubby was able to take l-tryptophan and 5HTP and p5p(activated B6) for sleep without waking up shaking a couple of hours later after he worked up to a therapeutic dose on the Japanese knotweed. It probably took a good 6 months or longer to rebuild his serotonin reserves. He had always had an adverse reaction to the SSRI's the same as the natural precursors. Now he just takes p5p and passionflower for the GABA effects at night and also l-theanine in the daytime.
It is fine if you want to maintain an ongoing thread on lymenet. But some people do find it easier to just post questions and research etc here and have either a separate blog or a caring bridge site to post updates to.
Here are a couple of caring bridge sites that I follow. I don't mean to scare you away -- but these 2 young ladies stories clearly illustrate just how devastating long-term tickborne infections can be.
One of the most important things you can do going forward in my opinion is to keep a daily med and supplement list and document any significant changes in symptoms. This will be a long road -- most likely 2 or 3 years -- and it is easy to lose sight of any improvements.
On the other hand you can waste alot of itme trying ineffective therapies and convince yourself that you are making progress when you really are not. The key that is difficult to judge is whether a treatment is bacteriostatic or bacteriocidal. It takes time and intuition to make those judgement calls.
Good luck.
Bea Seibert
Posted by Susie R (Member # 30780) on :
Thank you, Bea for the helpful suggestions. Everything is filed away for possible implementation! I haven't gotten the results of his co-infection panels yet---we just don't know. They were only done a couple of days ago.
Yesterday, I noticed Greg had a couple of periods of "getting worse before getting better." Specifically, he had a tremor of his right hand and spasms in his left. He also had a period of time where he said he felt paralyzed, like he couldn't move. During these periods, he had difficult formulating his thoughts and speaking.
I can only assume this is the "getting worse before it gets better" reaction. Now that I know that he has neurologic Lyme, I wonder how I could have ever thought he had functional bipolar disorder. His episodes are more like waxing and waning "organic" attacks characterized by confusion and agitation. Now I know.
I think I am going to get a consultation with Dr. S. who comes to Albany once a week, if nothing else for a game plan. I trust my team of complementary medicine practitioners but I think a second opinion and consult is indicated.
Greg is such a wonderful guy. I was really working hard yesterday to take care of him, bringing him his bone broths and smoothies and doing the one thing that relaxes him most---deep tissue massage on his back and shoulders. He looked up at me and said, "Mom, I'm going to put you in a really good nursing home and make sure they treat you right when you get old." Made me laugh out loud. Then he said, "I'm still in here." Meaning his personality wasn't completely eroded from this horrible scourge of a disease.
I love this child of mine.
Susie
Posted by seibertneurolyme (Member # 6416) on :
Susie,
Please monitor your son very carefully. Technically he should not be herxing with every dose of meds. He sounds more like my hubby who for years had a reaction to every dose of antibiotics -- based on either the med half life or time to peak dose. It would cause either increased tremors or seizure-like episodes. No one has ever really been able to explain this satisfactorially to us.
Eventually what got him out of that response was to start very low and slow on multiple meds to treat his 3 major infections all at the same time (lyme, babesia and bartonella)-- took 8 months to get to what that doc considered a therapeutic dose on 5 meds. And actually that was a bacteriostatic level. Much more effort has gone into trying to get to the bacteriostatic doses.
There is one book you probably should definitely read -- it has been on my wish list for years -- Too Good to Be True? Nutrients Quiet the Unquiet Mind: A Four Generation Bipolar Disorder. I think it was the author's son that had lyme disease. I think the book is very similar to a couple I already have -- Brain Recovery.com and The Brain Wellness Plan.
I think that by the time your son recovers from this illness you will have a whole new perspective on nutrition and psychotropic meds.
Hubby does so much better with amino acids and nutritional therapy than he ever did on any of the psych meds. His initial symptoms were nausea/dry heaves and a Parkinsonian tremor and he remained undiagnosed for a couple of years.
He had 2 psych admits early on for suicide attempts so we made the rounds of neuros and psychiatrists with diagnoses such as anxiety and depression and pseudoseizures etc. Without a rash or memory of a tickbite and with negative Western Blots it has been a long uphill battle to get properly diagnosed and treated.
You especially need to understand that these infections definitely rob the body of many essential nutrients and diet alone will not replace the deficiencies. B vitamins, magnesium, manganese, zinc and the list goes on -- be sure to also research KPU or pyroloria on this forum.
Also might be a good idea to research iodine as well -- I posted several links on that in the past. Also vitamin D.
I reread your first entry and there is one other statement you made that may need further investigation. You mentioned your son lying down so he would not faint. This raises a possibility of orthostatic hypotension or POTS. Lyme puts so much stress on the body it can deplete the adrenals or it can even attack the HPA axis directly resulting in this presentation. Hubby has to take extra sodium to keep his sodium levels within normal range. And he is one of the lucky ones -- many are severely disabled by POTS.
Bea Seibert
Posted by glm1111 (Member # 16556) on :
Hi Susie,
Sending good thoughts to you and your son Greg. I have been on this Lyme journey for over 30 yrs and just wanted to add that after 4 yrs of abx including 6 mos of IV Rocephin I was still sick.
I am sure I needed the abx to calm down the heavy bacterial load that I must have had. Just a little background to let you know that what turned the corner for me was doing herbal antiparasitics and the salt/c protocol.
As Bea mentioned G.I. parasites can be a problem with Lyme patients. Check out
because this is what came pouring out of me after doing 6 mos of salt/c and antiparasitic herbals.
Willy Burgdorfer found Adult Filarial Worms in the ticks he dissected and a researcher by the name of Eva Sapi continues to find them in over 40% of the ticks she has dissected.
Dr K. treats ALL of his patients for parasites/worms first before he goes after the other infections. Just wanted you to be aware of this for your son.
Gael
Posted by carly (Member # 14810) on :
"Mom, I'm going to put you in a really good nursing home and make sure they treat you right when you get old." ----------------------------------------------------------- I was thinking along the same lines, you deserve the best. You are off to such a great start! Just remember, it's a marathon not a sprint.
Posted by Susie R (Member # 30780) on :
Thank you, everybody. We plod on. My plan at present is to continue with this course of 1 antibiotic as currently prescribed, along with all the supportive stuff, and see where we get.
I have to say I had a stunning (as in I am completely stunned) experience with an ID person. Since I am a physician, I called my local academic medical center and asked to speak to "the ID person who has the most experience with Lyme."
That person did call me back in short order and told me that the only way to determine whether my son had Lyme was to do a spinal tap and look for evidence of infection----ie., white blood cells. Barring that, my son's positive Western blot (with what? 8 or 9 positive bands) didn't mean a thing. Nor did it mean a thing that he has been in cognitive decline for 4 years. He did warn me to stay away from "so-called Lyme Literate doctors."
I thanked him politely and hung up, aghast. I feel like Alice in Wonderland, like I just stumbled into a rabbit hole. Curiouser and curiouser! But incredible, nonetheless.
Even untutored as I am, I *know* something is eating away at my son's brain.
He feels better today after sleeping a lot this morning.
One day at a time. Susie
Posted by momindeep (Member # 7618) on :
Susie,
Most people on here, that have had the unfortunate experience of seeing an ID doctor can tell you that it was nothing short of a nightmare...avoid them like the plague. My daughter was in the phyciatric ward one time and an ID doctor practically accosted me in the hallway while I visiting my poor daughter and she told me that my daughter's LLMD was a quack and we were victims of a charlatan...
I kindly told the ID doctor (although I seething underneath), thank-you, but it wasn't like we were doing voodoo hocus pocus...it is antibiodics for heaven's sake!
She continued to press me, and I shut down completely...would not discuss anything else with her unless she had a solution for my daughter's distress, which she did not.
They are so so so brainwashed...and the scary part is, ID doctors...ANY doctor can has research at their finger tips...yet this continues. I thought doctors were supposed to think outside the box...what happened to intellect and thought-provoking curiosity?
Oh, well, enough of that tirade...
Now you know and won't go down that road again.
Sorry.
Posted by aklnwlf (Member # 5960) on :
Welcome! It's gonna be an uphill battle but now at least there's an end in sight.
Posted by kidsgotlyme (Member # 23691) on :
Welcome Susie! I think that EVERYONE here on the boards have felt like Alice in Wonderland at some point.
While I do love the movie, I'm not fond of it in real life. I hope that you will be able to make a difference in your circle of influence.
Posted by Susie R (Member # 30780) on :
Thank you, everybody. One of these days I will be in a position to help. And I will. This is one criminal state of affairs.
Good morning for Greg this morning! We'll take it. He spent the last two days in a horrible mental fog with crazy neurologic reactions---tremors, spaasms, profound weakness almost like paralysis. This morning he is moving and a little less confused than he has been.
He's got a guitar lesson today with a wonderful man who is very understanding. It so happens he is very into alternative health, nutritional health, etc. so he understands Greg's situation. He made both Greg and I very happy to say that Greg should come in for his lesson as long as he is able and not to worry about his ability to focus or to learn new things. He says that there's always something healing in music.
It's funny how adversity brings out the best and the worst in people. Some people have been absolute angels to us---my friend, whose Lyme diagnosis tipped me off to Greg's problem, this wonderful guitar teacher, Greg's brother, who has been so supportive, my niece who is very caring and helpful with Greg, so many of you who pm'd me with Doctor suggestions.
While others just show no understanding and no compassion, like the IDiot I talked to on the phone who warned me off LLMDs.
Today is day 6 of 1000mg. amoxicillin, probenecid, Paragard, probiotics, K-Pax. Greg had what looked like 2 days of increased symptoms. (Herx?)
We march on. Susie
Posted by laura j (Member # 14257) on :
Susie,
I didn't read what anyone else wrote in response to your post but I just want to say what a great idea to post his story and then have all subsequent updates/posts/replies all in one place.
Why the heck didn't I think of that?! Sure would make everything a whole lot easier to have it all in one place!
I also want to say you're a great Mom and he is lucky to have you. I'm sure he will make huge improvements with your help. Sounds like you're on the right track!
Posted by t9im (Member # 25489) on :
Hi Suzie:
I wish Greg the best. He is not the exception.
It's hard to explain all the crap those with advanced Lyme have to go but I have found the utube video's below useful. I send them to friends to help explain some of the controversy.
I've read many stories of people with Lyme where it's taken 20+ MD's and well over two years for a correct diagnosis.
Posted by Susie R (Member # 30780) on :
Thank you, Tim and Laura. Greg had a bad section of the day today in which he felt confused and foggy and weak. Better in the morning and evening. He is being so good about his diet---drinking his probiotic smoothies and eating what I make for him.
My big worry right now is what we will do if my doctor can't do IV therapy for him. I know they will do Bicilling IM injections, and that is a reasonable next step, but I know Greg will need IV meds at some point and I want to be prepared for that. We are still waiting for his co-infection results, but I think he might have a Bart rash----a couple of years ago, it was like he developed this series of stretch marks overnight. Now, after a little research, I think maybe not stretch marks. I will show them on our next visit.
Susie
Posted by Susie R (Member # 30780) on :
Day 7 of amoxicillin. Greg woke up and felt better, only a little foggy. Was able to go out for breakfast with his dad and enjoy himself.
I'm still concerned about the blood-brain barrier since most of Greg's symptoms are neurologic and psychiatric. Amoxicillin won't cut it.
Trying to find out if my CAM providers can do IV therapy for us.
I'm exhausted today from a week of researching like mad and helping Greg through a couple of really bad days.
You folks here on this board are a bunch of angels! The collective experience and knowledge of all of you is tremendous, and we who are newly walking this path, are very grateful.
Susie
Posted by dian (Member # 14335) on :
I'm so glad that you found us. I, too, am a mother of a daughter, age 23 now, who was misdiagnosed at age 15 with mono, which two years after that she was correctly diagnosed with lyme and now bartonella, etc. It has been an extremely long hard road as I'm sure it has been with you, not knowing what was wrong with your son. We are still fighting this beast and will continue to do so. I will be watching this post and all your updates. I pray that he will get better in time with med's and your prayers and help. Linda
Posted by Susie R (Member # 30780) on :
Thank you, Linda. I have been praying for all our precious children, and for Lyme sufferers everywhere. What a community of caring! It is amazing how profound the help.
Today, the fog lifted. Clearly. It was like Greg has been underwater for years, and today his head bobbed up and broke the surface.
I heard him laughing and talking with his friend on the phone. I peeked in his room. His face was animated, not flat and dull as its been for years. He talked for 20 minutes straight, something unheard of for the past few years.
He's still in there.
I emailed my provider today to ask if they are equipped to do IV antibiotic therapy for Greg, and they are. Given how ill he's been (neuropsychiatrically) they are taking a 'low and slow' approach. I understand that now, and I agree with it. The two days of Herxing Greg has had on amoxicillin were really scary. He barely could feed himself!
I am prepared for a long, rocky road, based on what I have been learning about tick-borne diseases, but this response to amoxicillin, so soon, is heartening.
I am halfway through the Weintraub book on Lyme and I have seen UNDER OUR SKIN.
I am very fortunate that Greg had such an unequivocal WB result. None of his doctors have every raised the possibility of Lyme.
Susie
Posted by lou (Member # 81) on :
Some people have had great success with bicillin, so IV is not the only big gun. And it is good for him to start low and slow before it gets to the big guns. Some people have actually done well even with just orals. What you will find out is that the response to meds is quite varied among patients.
Posted by momindeep (Member # 7618) on :
Susie...Wow, that report is so very encouraging! It must make your heart sing to see these positive things happening for your son.
It is just plain wonderful.
Sue
Posted by arkiehinny (Member # 26546) on :
Susie R, thank God you're here!!!!!!
Posted by Susie R (Member # 30780) on :
Greg and I have been tracking three of his key symptoms: agitation, mental fogginess, and overall physical condition. We use a scale of 1 to 10, with 10 being "the worst ever."
Before starting amoxicillin:
agitation: between 4 and 7 most days. mental fogginess: between 4 and 7 most days. physical condition: between 2 and 6 most days.
On days 3, 4, and 5 of this first course of antibiotics, he rated agitation up to 9, mental fogginess up to 10, and physicial condtion up to 10.
On days 8, 9, and 10: agitation: 0 to 4 mental fogginess: 2 to 6 physical condition: 2 to 4
This seems to clear to me to show a Herx reaction on days 3, 4, and 5 and improvement thereafter.
Greg's mom... Posted by Susie R (Member # 30780) on :
How could I ever have mistaken his brain fog and confusion for BIPOLAR DISORDER?
I feel so bad today. When he goes foggy, he goes foggy DEEP.
I have to stay steady. I have to go the distance with him.
I am sad today.
Susie
Posted by momindeep (Member # 7618) on :
You are not alone...my daughter was dx with just about every mental dysfunction under the sun for her mental difficulties...but I did always suspect it was lyme related...and so did you with Greg.
The problem is/was is that we are stuck in a broken medical system when it comes to Lyme...why is it that WE have to figure it all out and do years of research? And have to pay untold thousands of dollars for bad medical advice?
Don't beat yourself up...you are on the right road now. I don't go to the place of shoulda, coulda, woulda...we all do what we can for our loved ones, whether we miss the mark or not, by gosh we are giving it EVERYTHING we have.
Sue
Posted by seibertneurolyme (Member # 6416) on :
Susie,
Results thus far do sound encouraging. Hang in there.
This is already becoming a very long thread. My suggestion would be to copy or print it off at frequent intervals. You would not want to lose all this history and details -- unfortunately due to the way the forum is backed up sometimes out of the blue a thread just disappears into the wild blue yonder and cannot be retrieved. Seems to happen more frequently with longer threads.
The forum has chosen not to be indexed by google or other means so once it is gone it is gone for good. That is one of the reasons I suggested possibly using the Caring Bridge site as an alternative.
Bea Seibert
Posted by Susie R (Member # 30780) on :
Ok, that's the second time you've suggested that this thread is not appropriate here. I can understand how taking up this bandwidth might not be helpful to the community at large, so I will just stop now. Thank you to everybody who responded.
Susie
Posted by seibertneurolyme (Member # 6416) on :
Susie,
You totally misunderstood my commnets.
I just know that if I was keeping a daily diary and it suddenly disappeared I would be upset. This has happened to other people in the past with threads requesting help and recreating the info is next to impossible.
I definitely don't have any problems with you keeping this thread going indefintely. Please don't stop updating because of a misunderstanding.
Bea Seibert
Posted by Susie R (Member # 30780) on :
Oh, Bea, I am sorry I misunderstood. I don't so much care if the thread disappears. It's the process of doing it that is helping me, plus the educated comments I get.
I am definitely jumpy, my son is really ill and I am working hard at taking this one day at a time. It's still so new, and hope and despair dance with me willy-nilly until I feel dizzy and unfocused.
He is on so many psychotropic medications that I worry about the burden on his body. I have a phone consult scheduled with a LLMD-psychiatrist on Wednesday to ask some questions.
My main questions are:
1. How good an idea is it to attempt to taper him off some of his psychotropics, and in which order? (I am thinking of getting rid of the blasted Tegretol first because it interferes with doxy, making it hard to get adequate blood levels.)
2. Given my son has such severe neurocognitive-psychiatric issues, how aggressive should treatment be?
3. If he needs hospitalization, psychiatrically or medically, is there any place we can go where someone understands late, neuropsychiatric TBI?
May the good Lord watch over all of His children who suffer.
Susie
Posted by seibertneurolyme (Member # 6416) on :
Susie,
Glad we got that straightened out. I am also getting sleep dprived again as hubby is back to having nightly spells of sweats and nausea and tremors so I thought maybe I wasn't making any sense.
Anyway, my thoughts on your questions. Hubby is on ativan and low dose topamax. He is older and has been at this longer of course than your son -- but he says he can tell when he feels well enough to decrease or stop either of those meds -- his brain just feels too agitated to make any changes right now.
I think you will have to just monitor your son closely -- and if you make changes make only 1 change at a time and go slowly. A year ago hubby had decreased the ativan from 4 mg daily down to 1/2 mg daily -- but it took 8 months to taper the dose.
And then he crashed and ended up in the ER and hospital and they put him back on 4 mg daily. Actually while in the hospital it is usually 6 or 8 mg IV rather than oral ativan daily. That is the main med we have used over the years to stabilize hubby and we at least know how he reacts to that med.
As far as the hospital choices -- not very many options unfortunately. The best you can hope for is to either have a PCP or LLMD with hospital privileges. There are no lyme hospitals like there are cancer centers.
In 2007 hubby was actually in the Lenox Hill Hospital in New York City under the care of a supposed LLMD neuro. It is a long and not very pretty story. Anyway the doc suggested that hubby's problems were all psychiatric and we tried to get him transferred to the psych dept at Columbia University but that did not happen. They had no beds available and even though that hospital has the Lyme Disease Research Center under Dr F they could not even guarantee that the psychiatrist he would see would be lyme literate.
I ended up checking hubby out AMA (against medical advice) and took him to another LLMD who saw him on a one time emergency basis thanks to a referral from another Lyme Net poster. We got lucky and that doc agreed to prescribe levaquin for the suspected bartonella or BLO. And from the first 1/2 pill dose that med stopped hubby's dystonia spells. At that time we were calling them muscle rigors or I just described it as transient quadriplegia.
Since you are in New York the most thorough neuropsych evaluation would probably be the one at Columbia Presbyterian with Dr F. Have thought of doing that with hubby but the problem is that even though they do evaluate they do not offer treatment. But since you live closer you could probably find LLMD's who could follow-up. We did have his SPECT scans done there and were very impressed with the facilities and technicians.
The technician explained more about brain neurochemistry than any of the numerous neurologists we have been to. Did confirm that they had seen tickborne patients with dystonia and myoclonus and Parkinsonian tremors and all the other crazy movement disorder symptoms that hubby has had.
I think you may find that the psychiatrists who treat lyme patients are a lot like other LLMD's -- you have some who treat low and slow, others in the middle and then a few who are blasters that use high dose multiple drug combos and just throw in more meds for symptom control.
You are just going to have to go with your gut instinct as to which approach to use. My advice would be to get a couple of opinions and go with the doc you feel the most in tune with.
I know you want things to change quickly, but your son has been sick for a number of years so that makes a big difference in the recovery time.
Best wishes.
Bea Seibert
Posted by Susie R (Member # 30780) on :
Thank you, Bea. I have thought about going to Columbia, but I don't see the point of putting my son through all that just to get a diagnosis I already know he has----neurologic tick-borne illness(es). It would be different if they provided treatment!
Hopefully, I will get Dr. B's general opinion of these issues during our phone consult on Wednesday.
I am thinking you are right about just tapering slowly.....hopefully we can do this!
Susie
Posted by seibertneurolyme (Member # 6416) on :
Susie,
Even if you do not do the full work-up at Columbia it still might be a good idea to do the SPECT scan. We were very disappointed recently when hubby repeated his SPECT scan after 3 years and the report got worse. His hypoperfusion is no longer mild to moderate but is now moderate to severe. And this was after he had done 6 months of IV Rocephin and 3 months of IV Zithromax.
Some docs do base the decision on whether to do IV's on the severity of a SPECT scan.
Another LLMD psychiatrist that I really respect has written several articles and posted them on her website. Since she is also a tickborne patient that adds to her insight into these diseases. you have probably already run across this site but here it is anyway.
Bea Seibert
Posted by Susie R (Member # 30780) on :
Got some of my questions answered. Dr. B validated the approach of my son's treaters by saying not to treat so aggressively that we can't manage the Herx reactions. Start with oral meds, then go to lower dose IVs and work up.
He said in general, leave the psych meds alone and don't taper now in active treatment, though lower doses might be considered.
He also said as long as my providers were open to treating adequately, following established guidelines for long enough treatment and treating co-infections, we didn't necessarily need to go to more "famous" LLMDs. Which made me feel better about giving it time, as my son would travel very poorly, especially if we had to do it regularly.
Susie
Posted by Susie R (Member # 30780) on :
Today, day 18 of amox. and probenecid, Greg woke up and said, "I feel surprisingly well today."
We're scheduled for a PICC line on March 28th and starting IV meds then, too.
Susie
Posted by momindeep (Member # 7618) on :
Yahoo!
Posted by Susie R (Member # 30780) on :
There is a definite trend towards diminshed agitation, diminished depression, and decreased confusion and brain fog. Day 21 of amox. + probencid today.
Susie
Posted by momindeep (Member # 7618) on :
You must be so hopeful...keep us posted on what is going on...this is interesting at the very least.
Sue
Posted by lou (Member # 81) on :
Remember that day 21 on is herx territory, so don't be surprised if he gets worse temporarily.
Posted by Susie R (Member # 30780) on :
Thanks for the heads-up, Lou.
Yesterday Greg got IV glutathione and IV vitamins and minerals.
He did some strength work and was clearly stronger than before.
I postponed his PICC line and IV antibiotic treatment for now. I think I was letting my anxiety rush things. I need to talk to his treaters about his Bart rash and where the IV treatment should fall in the overall treatment approach. Also, he is getting a little better each day on orals. so he hasn't plateaued on this treatment yet.
We track 4 symptoms twice a day on a scale of 1-10. So if all 4 were as bad as possible, his total score would be 40. A symptom free day would be 4. His highest score was on day 4 of orals: 34. His lowest so far--9 on days 9 and 17. And the trend is definitely towards lower numbers.
I will interested to see what today's numbers are.......
Susie
Posted by Susie R (Member # 30780) on :
7 in the morning, 6 just now.
Wow. I hear my son laughing upstairs. I haven't heard him laugh in ages.
Thank you, Lord, for a few good days.
Susie
Posted by Susie R (Member # 30780) on :
Hah! Day 23 today, and he's had a Herx. Confused, reaching out and unable to wrap his hand around a glass, slowed mentation, and agitated. Just like day 5, just not as bad.
Overall, Greg's had more good days in the past two weeks than he has had in the past two years. Seriously.
Susie
Posted by sbh93 (Member # 30429) on :
Susie,
Thank you for posting your experience. I am a few weeks behind your son in treatment, with a doctor following a very similar approach.
Meaning--gradual start, adding meds one at a time, IV start weeks into the future pending progress
Please keep going and I like the idea of rating symptoms. My doc told me to keep a journal and I just couldn't think of a manageable way to do it with my laundry list of symptoms, especially since I have to track all the meds and supplements too (and work full-time, ahhh). I'm going to pick the worst five to rate daily...
Thanks, sbh
Posted by Susie R (Member # 30780) on :
sbh, we picked Greg's most obvious and troubling symptoms: agitation, mental fog, depression and anxiety, and physical well-being (or lack thereof).
I made a table and twice a day, we rate the four symptoms. I am graphing the daily totals just to get a rough idea of improvement, and the visual aid is really helpful. We can see the spikes (like on Day 5 and Day 23) and also the slight downward trend. I keep this in a little spiral bound notebook in which I also keep track of his antibiotics, supplements, and questions I have for our next appointment.
It is good to have data like this to use to evaluate treatment responses, and the use of numbers to quantify symptoms makes comparisons from day to day, week to week, month to month easier.
Good healing to you. Susie
Posted by Susie R (Member # 30780) on :
The past 3 days have been tough days. 24/40; 23/40; 23/40. Mostly brain fog, fatigue, and agitation.
We see our provider today at 2pm. Greg says, "To heck with bowling, give me the IV."
I am not knowledgeable as to what to do next. Go IV Rocephin? Add Flagyl? Treat bart? I know it is a marathon, not a race.
We'll see what is recommended. I don't even have a clue.
Susie
Posted by lou (Member # 81) on :
Well, you might wait and see how he feels after the herx fades, to decide whether to go with IV. That will produce an even bigger herx, I am guessing.
It is hard not to jump to conclusions about what to do or not do when the symptoms wax and wane and herxes make you feel worse temporarily.
Maybe give low and slow a longer run? You are still in the first month of treatment, right? Not a long time comparatively.
Posted by Susie R (Member # 30780) on :
Bless you, Lou, for offering support. I am grateful.
I feel pretty good after the visit. Here's the result:
1. Discussed his labs. He came back negative for erlichiosis, POSITIVE for mycoplasma pneumoniae, bartonella pending. 2. She looked at his "stretch" marks and also thought they were BLO. 3. My lovely, caring NP is completely amenable to working with us even if I seek "quarterbacking" from a more experienced LLMD. So I have an appointment April 27th with Dr. L in NY. My NP has already worked with Dr. L's NP so there is established communication. 4. She added rifampin, so now he is taking rifampin 300 mg. daily x 1 week then increasing to 300mg. twice daily. 5. Greg is going for another glutathione IV this week it helped him feel better tremendously. 6. He is also going to use their infrared sauna starting for 30 minutes once weekly. 7. She also prescribed glutathione cream. My pharmacy is going to try to compound it for us.
I feel like we are in good hands, especially if we get Dr. L involved in overseeing the local care.
I am pretty scared for my boy. He is very sick.
Susie
Posted by DKat (Member # 30941) on :
Susie, It sounds like your son is in good hands. You have several qualified doctors (NP) working together and you are learning quickly what helps best.
God bless Greg with quick healing and you with peace & wisdom. It's great you share as you learn.
Posted by momindeep (Member # 7618) on :
Susie, I know your fear.
Sue
Posted by Susie R (Member # 30780) on :
Oh, Sue...it's your daughter that's been ill, right? How are both of you doing? I think I remember reading somewhere that things are a wee better for her this season? I would rather have this disease myself then see my child suffer so.
DKat, thank you for your blessing. From your mouth to God's ears!
Susie
Posted by momindeep (Member # 7618) on :
Yes, kind of you to remember...she is improving and I hope someday I can breathe again.
Posted by Susie R (Member # 30780) on :
Greg had two good days in a row after the 4th week Lyme cycle worsening. Today he got another glutathione IV and our phamacy is compounding glutathione cream for him to use topically.
There are brief glimpses of sun through the clouds. I can tell his brain fog is clearing.
I'm still glad we are going to see Dr. L April 27th for a consultation.
Today he has a fair amount of fatigue but still seems clearer, mentally.
Susie
Posted by Susie R (Member # 30780) on :
New symptom today: hyperacusis. 13/40. Just beginning our second month of treatment.
30 days of amoxicillin + probenecid Day 31, added rifampin 300mg. po BID, continuing amox. + probenecid.
Today is day 35 of treatment.
.........miles to go before we sleep.....
Susie
Posted by seibertneurolyme (Member # 6416) on :
Susie,
If the only new symptom he is getting from rifampin is hyperacusis then you are really lucky. I would have expected that med to cause increased anxiety at the very least. Many many people can not tolerate starting that med at 300 mg as your son did. In the past docs used to start patients at 50 mg or even lower.
Your son seems to be making remarkable progress. So glad for that.
Can't find my link right now, but if the glutathione is such a big help you might want to research the methylation cycle in depth. There may be a missing nutritional component or your son could be like hubby and have a genetic defect in that cycle. Or it might also be indicative of babesia -- one of the nutrients depleted by that pathogen.
Bea Seibert
Posted by Susie R (Member # 30780) on :
Thank you, Bea. I'm sorry you and your hubby have such a difficult row to how.
Greg's brain fog is also increased. He has a unilateral fine tremor today. He feels ill.
I'm glad we have an appointment with a LLMD later this month.
Posted by Susie R (Member # 30780) on :
In the past week, Greg 'spiked' with bad symptoms again in the middle of week 5 of treatment.
Then, yesterday and today----really good days. I keep a bar graph and a rough pattern is taking shape.
Dr. L. is speaking at Skidmore College on April 12th at 5pm. I'm going to his lecture.
We have an initial appointment with him on April 27th.
We endure. Onward.
Susie
Posted by DKat (Member # 30941) on :
Susie, I'm so glad your son had two good days! The reprive always helps.
How are you feeling? Do you expect your test results back by the 27th?
God bless you both with many more good days.
Posted by merrygirl (Member # 12041) on :
just wanted to mention that if the glutathione is helping, you can order ready to go uv pushes from infuserveamerica.com. you do need an rx, but i am sure ypu could get it. I was a vet tech before getting sick. I used to be a wizz at blood draws, ivs, i couldnt afford the infusions at the office 2x a week, so i asked if i could just infuse myself with a butterfly. She thought that was great! (Obviously, i had to prove i knew what i was doing) gosh i wish this llmd was still around , she was super aggressive and all over it. But anyway....
So i did that until i ran out of veins. I have horrible horrible veins. But i got a good run out of it. It helped me and was cheap. They will send you the butterfly caths too. I am sure being a dr, you could easily do them at home. That company is great to work with. They have great b12 for inj as well. All delivered to your door.
Posted by merrygirl (Member # 12041) on :
Oh, almost forgot that there is a website called lymelog. It is pretty cool. You can rate symptoms, and it creates a graph for you. Definitely check it out.. its at the top of our lymfriends.org page good luck everyone.
Posted by Susie R (Member # 30780) on :
Merrygirl, THANK YOU for the information! My son's NP wrote a Rx for glutathione cream. We have a compounding pharmacy that makes it up.
I'm going to check out that lymelog right now!
Posted by Susie R (Member # 30780) on :
We are following four symptoms for Greg: agitation, anxiety-depression, brain fog, and fatigue/malaise. Each symptom is rated 1-10, with 10 being the worst ever. So his worst hypothetical day would be rated 40. So far, his worst day reach 30, his first Herx day in the first month.
It's interesting. I have enough days of graphing Greg's symptoms to see improvement already.
In his first 30 days of treatment, he had 16 days of reaching a score of 15 or more.
In the past two weeks, which represent days 30-45 of treatment, he has had only 3 days of reaching 15 or better, and those days seemed to be part of the four-week cycle of borrelia shedding.
Graphing is really a very powerful tool.
We saw Dr. L of NY speak last night. This is the doctor that I am brining Greg to see on April 27th for a consultation. I liked him a lot; he described himself as "mainstream" or allopathic, which is a good complement to the very alternative-oriented practice that is treating Greg now. I want the best of both worlds.
May all who suffer, know peace.
Susie
Posted by Susie R (Member # 30780) on :
Greg's co-infection labs came back.
Positive for Bart, negative for erhlichia.
I'm not surprised, he has the Bart rash, but my heart kind of dropped and I feel like crying.
s.
Posted by LymeGoAway (Member # 25041) on :
So sorry to hear about the Bart diagnosis, but at least you know what you're up against.
From your other post, it sounds like Greg is making some improvements, and that's great.
Posted by IckyTicky (Member # 21466) on :
Wow... as a mother of a Lymie (now age 8) previously diagnosed with ADHD, ODD and is on the "Autism Spectrum" I'm so... out of words! Welcome to the board Posted by Susie R (Member # 30780) on :
Thank you, Icky and LymeGoAway....this board and the people posting are just wonderful. Thank you both---and everybody else supporting us---on this journey.
May all who suffer, know peace.
Susie
Posted by Susie R (Member # 30780) on :
Yesterday, Greg had a day rated FOUR!!!!! It's the first day in probably THREE YEARS he hasn't had either significant brain fog, anxiety, depression, profound fatigue or agitation. It was a day...."without any symptoms"! I think it's because the Bart is so neurotoxic, and the rifampin is really helping.
He also feels well this morning and is out on a walk with his lovely younger brother.
All I can say is "thank you, Lord" for a good day. I know the battle isn't won, but it's a very good sign that he is responding so well so early. We'll take all the good days we can get.
Susie
Posted by momlyme (Member # 27775) on :
That is so awesome!
Here is to many more!!!!
Posted by momindeep (Member # 7618) on :
Ahhh...so very encouraging!
Posted by Susie R (Member # 30780) on :
Greg had a few bad days. Not as bad as the Herx days, but not well, symptomatic. Last night we were up together with him anxious and sick. I gave him an extra Klonopin, rubbed his back, and eventually he fell asleep. Slept until 1pm today, and now I hear him laughing upstairs at something funny on his computer.
We see Dr. L in NY this coming Wednesday. I am relieved.
Susie
Posted by Susie R (Member # 30780) on :
Came back from seeing Dr.L for the first time today. He was lovely.
He said Greg had the highest titer of Bartonella hensae antibodies he's ever seen. That's some dubious claim to fame...
We are stopping the amoxicillin and starting minocycline tomorrow. Starting at 50mg/day and going up, as tolerated, to at least 200 mg/day over a month's time.
He also recommended VSL probiotics, which I just ordered.
Apparently mino penetrates CNS well and is good against Bb. and Bart. Sounds good to me!
Susie
Posted by momlyme (Member # 27775) on :
I am so glad this appointment went well!!! Yeah!
Posted by momindeep (Member # 7618) on :
This is good news!
Posted by Susie R (Member # 30780) on :
For two days now, with minocycline, I have heard laughter coming from my son's room.
It's just so hard with him and his diet. He's going to be 21 years old on May 21st and he's got control issues around food, so I cannot be too pushy. I just wish he would clean up his diet (sugars, white flour, etc.) I only cook nutrient-dense, whole food, fresh, organic and local foods!
S.
Posted by DKat (Member # 30941) on :
That's encouraging...I start Minocycline tomorrow. (and not looking forward to 'new' drug).
It is so hard to eat right. He's fortunate to have you provide the right-good food. It's probably hard for him to break the 'yummy sweet' food habit.
[ 05-01-2011, 05:06 PM: Message edited by: DKat ]
Posted by Susie R (Member # 30780) on :
Good luck with the mino, DKat. Greg just had his first "4" day since starting treatment 10 weeks ago. YAY!
S.
Posted by rhody (Member # 31632) on :
Susie....I am captivated by your (and your son's) story. I have just been diagnosed after years of severe struggle with brain fog and debilitating neurological issues. This is all very overwhelming for me and I have just begun treatment with a specialist in N.Y.. Trouble is, I am from Ontario Canada and finding a LLMD is next to impossible...
Posted by t9im (Member # 25489) on :
HI Susie:
One of the drugs that has worked well for our daughters Lyme is Tindamax. It really helped with the neurological issues.
We may be on the tail end of her Babs treatment and in a month or so go after the LB more.
Posted by Susie R (Member # 30780) on :
Tim, it is hard to watch our kids suffer, isn't it?
I'm moved beyond words today. Greg started talking about going back to college. He had another "4" day today----a day without feeling bad in any of the four areas we track. He said, "It's been so long since I felt good that I think I am just without symptoms, or I'm just trippin' on something."
I know the road ahead is still long and fraught, but I am grateful that he's had even one good day. It's been so dark for so long.
Susie
Posted by Susie R (Member # 30780) on :
We're in the third month of treatment. Greg started on minocycline 50mg. twice a day. He had 3 or 4 days of feeling really, really good. But when I pushed the dose up to 150 mg. twice a day, he felt sick and toxic. Yesterday was a horror.
So I skipped this morning's antibiotics to give him a chance to recover, and backing down again to 100 mg. twice a day, which he tolerated just fine. I need to have his routine labs done early next week in preparation for his second visit with Dr. L later in the month.
My "baby" will be 21 in a few days. It is very tiring to be doing this kind of mothering at age 55, but we have a close and special relationship, and I dearly love my brave and courageous son.
Susie
Posted by seibertneurolyme (Member # 6416) on :
Susie,
I thought the standard dose of mino was 200mg one time per day? Hubby was only on 100 mg total every other day for months and then we switched to daily and eventually got to 150 mg daily.
Mino is much stronger than doxy. I honestly don't know of anyone who takes more than 200 mg daily.
Bea Seibert
Posted by lou (Member # 81) on :
Yes, that could be too much. Minocin can cause severe dizziness in the beginning too. Seems to ease off later. I had to stop it for a while because of that, then when I restarted it, no dizziness.
Posted by DaveNJ (Member # 17362) on :
Susie,
i hope you had a nice mother's day. Nice too see the excellent progress your son is making.
Dave
Posted by momindeep (Member # 7618) on :
Just wondering how things are going for you and your son, Greg...haven't heard from you in awhile and been thinking about you.
Sue
Posted by HopesAlive (Member # 29774) on :
Just stumbled across this post after it was bumped up, and I am so glad it was.
I, too, hope Susie will come back and update.
Greg is so blessed to have a mom with such knowledge and compassion.
What an amazing story.
Posted by seibertneurolyme (Member # 6416) on :
Susie,
Any updates? Looks like it has been almost a month since your last post.
Bea Seibert
Posted by Susie R (Member # 30780) on :
It's been a while because it's busy season here chez nous. My 62-year-old husband took it in his head last year to open a drive-in restauarnt on the lake (www.pirateslakesidegrill.com) and I am spending what time I can away from Greg there.
Greg is currently on 200 mg. of mino a day, 300 mg. of rifampin twice a day, and 2 drops of Samento, Banderol and grapefruit seed oil a day.
This week, he had a run of FOUR GOOD DAYS in a row. (Previous longest run of good days was 3). He has a good attitude. He feels he has made oodles of progress. When I think of his worst day before starting treatment, I agree. He was having continuous panic attacks and was so confused and encephalopathic, he didn't know where he was half the time. He is TONS better compared to that, but he still has bad days and they can be pretty bad. But the good days---ah, the good days---we haven't seen good days like this in many years.
Also, he has resigned himself to needing lots of time and space to heal, and he isn't grieving so hard for his lost life, which makes things easier on both of us.
Thank you for asking, and may the Good Lord hold all of us sufferers and caregivers close to His heart.
susie
Posted by Susie R (Member # 30780) on :
Ok, it's official.
200 mg. of minocycline a day is too much. 150mg. seems to be the Goldilocks dose: just right.
On it (and rifampin, grapefruit seed extract, Samento and Banderol) he is showing clear improvement. Because I keep a numerical graph of symptom severity, it's easy to see the improvement over time, especially during a bad day when both of us feel hopeless.
In fact, he is doing well enough to want to go back to community college in the fall and take one course. That will help him feel less "ill" and more on track developmentally. It also motivates him to take care of himself----he feels like he has a life.
One day at a time........
Susie
Posted by fx (Member # 32208) on :
Thank you for sharing you experience! My LLMD took my blood for co-infection testing. It may be possible he will adjust my treatment when he gets the results, I am thinking for myself now to add herbs (GSE, Samento and Banderol) supposedly they help with cysts (round body) form of bacteria. It is possible that they are already forming in my body in presence of abx ?? Please advise if you had similar situation.
Posted by Susie R (Member # 30780) on :
IMO, in treatment for TBD, you approach this from two angles: decrease infective load, and modulate the immune response to clear the body of cellular debris without that immune response making you sicker.
Therefore, you address all the infections and infectious forms with the appropriate antibiotics; you utilize herbs, minerals, enzymes and alternatives with some rationale behind them.
There is no one way to treat this disease complex and every individual is different. The reason we added the GSE, Samento and Banderol was to address the cyst and biofilm elements.
I wish you healing and wellness, Susie
Posted by momindeep (Member # 7618) on :
Wondering how things are going for Greg and what you have been doing these past weeks.
Hope Greg's progress is going forward and that you are getting results from your protocols.
Thinking of you both.
Sue
Posted by Pinelady (Member # 18524) on :
I'm glad your switching meds.
Susie loads of electrolytes helped me at my worst. And I wish we could all get them IV.
But I do believe IV antibiotics would have killed me early on I herxed sooo bad. But now I could handle them with my mind back.
I am so happy you found it.
Posted by Susie R (Member # 30780) on :
I guess we've just started month 5 of treatment. I am very, very happy to report the progress continues and is amazing.
Six months ago, my son spent most of his day having panic attacks, severe agitation, profound mood swings, depression, severe cognitive difficulties, fatigue.
He hasn't had a panic attack in weeks. He has more energy. He is taking a 5 mile walk 2-3 times a week and enjoying it. He is socializing again and beginning to go out with his friends. His mind is clearer. His tremors are gone. His mood has been really stable for the past 3 weeks. I hear him laughing frequently at something funny he comes across when he is on the computer. He is beginning to think about the future again.
While I know we are not anywhere near the finish line, it is just so heartening and hopeful to see how much progress he's made in such a (relatively) short time.
Thank you all for asking. Susie
Posted by Susie R (Member # 30780) on :
Greg has his third LLMD appointment today. Will report on what happens later today or tomorrow.
Susie
Posted by Susie R (Member # 30780) on :
Greg's liver enzymes are slightly elevated, more so this month than last; we are going to recheck them this week. I'm concered as to what this might mean - he's been doing so darned well on this regimen, I hate to think we have to stop prematurely.
Will post back soon...
Susie
Posted by James1979 (Member # 31926) on :
Dear Susie, Elevated liver enzymes?
I just have one word for you: COFFEE ENEMA!!
Serious. Don't knock it till you tried it.
All the best, James
Posted by momindeep (Member # 7618) on :
Thinking of you both and hoping you will update us on how things are progressing?
Posted by LymeCFIDSMCS (Member # 13573) on :
Susie,
Have you tested your son for XMRV? If not, visit the Whittemore Peterson's Website and look up XMRV and autism, as well as XMRV and chronic Lyme. There are many links between autism and chronic fatigue syndrome/ME, such as methylation cycle issues, hypersensitivity to stimulation, etc. The common link seems to be XMRV, but it is being increasingly suggested as an element in many cases of chronic Lyme/cos.
I have had a good experience with K-Pax.
I also think from experience walking through these bugs that they can actually create autism-like symptoms in healthy people. So it may be confusing as your son herxes as he may have an exacerbation of Lyme or co symptoms that look like autism symptoms.
Your treatment approach sounds great.
Posted by Susie R (Member # 30780) on :
Thanks for the info, LymeCFIDS. I will do some research.
Greg continues to improve. He still has some days of increased fatigue, feeling "bad", confusion but these are generally not severe and fairly short-lived.
He is SO much improved from just before we started treatment, it's hard to put into words. And we are not that far into treatment.
He continues on mino, rifampin, probiotics, Co-Q10, alpha-lipoic-acid, Samento, Banderol, and grapefruit seed extract.
Susie
Posted by lou (Member # 81) on :
Milk thistle helps with elevated liver enzymes. I have been on it for years. And it is often suggested to lyme patients by their docs.
Posted by fflutterby (Member # 28081) on :
Can you take it with rifampin though ?
Posted by Susie R (Member # 30780) on :
I did a very dumb thing and my only excuse is that I apparently have a Lyme brain, myself. Somehow, I forgot that Greg has 150mg. rifampin capsules, not 300 mg. So for over a week, I was only giving him 1 capsule twice a day, not the 2 capsules he is supposed to take. So after about a week, he started to get a little agitated and confused---his worst Lyme/Bart symptoms.
I feel really bad that I set him up for a few bad days.
This just tells us that his meds are just really keeping his worst symptoms in check.
I feel awful: for him and for me.
Susie
Posted by momindeep (Member # 7618) on :
Hey...everyone makes mistakes...and you are not well yourself. I was well when my daughter needed care, and I made mistakes too...it is madness to think that things like this won't happen...they will and they do.
I made bigger mistakes than that with my daughter...and felt horrible, but had to remind myself that I was doing the absolute best I could.
It will be okay...it is a bump in the road, and this too shall pass.
Posted by Susie R (Member # 30780) on :
Thanks, Momindeep....the regimens are so complicated! What can't be taken with what...the interactions...the multiple dosings each day.
I just hated to cause my son extra suffering. I'm hoping he'll have good days soon.
Susie
Posted by Susie R (Member # 30780) on :
Today Greg was low-energy, but not confused. That confusion is his worst symptom. He responded wihtin a day to the 300 mg. rifampin dose.
I have to just check and double check the pills when I set them out for the week. Mine, too.
Susie
Posted by seibertneurolyme (Member # 6416) on :
Susie,
Make sure you share this info with his doc. It might be time to add in a 2nd med for bart. Usually rifampin is combined with one of the fluroquinolones -- cipro, levaquin or factive.
The combo of factive and rifampin was what finally earned hubby a clear bloodslide and made his seizure-like episodes go away. It took him many months to get to therapeutic dose and there were setbacks along the way. But in the end he was able to stick to the high dose regimen for 6 - 8 months and that finally did the trick.
There are some other possible meds for bart, but I think the combo I mentioned is the one that has been tried and tested by the largest number of docs.
Try not to feel guilty. I know how hard it is to make decisions for an adult. Hubby was 45 when he got sick and many times during his various hospitalizations he hasn't even known his own name he has been so confused. So I had to make all the decisions about meds and treatments especially during those critical moments.
Now that he is thinking much more clearly we do discuss treatments, but try not to dwell on the choices. The mind is an amazing thing. Even when he was encephalopathic and didn't know his own name or mine hubby could usually remember the dates of various medical tests and treatments. He has had to recite his medical history so many times it seems like it is engraved in stone in his memory.
How is your treatment going? Maybe you should start a thread for yourself.
Bea Seibert
Posted by Susie R (Member # 30780) on :
Oh, Bea...it's so good of you to comment when I know you and your hubby are dealing with a healing crisis yet again. I am deeply grateful, and I will mention this to Greg's doc.
As for me....I'm on the same meds as Greg. I'm working my way up to rifampin 300 mg. twice a day and minocycline 200mg/day.
So far, I just notice an emerging symptom of that peculiar head stuffiness/wonky/dizzy/weird that so many report. This, along with my usual profound fatigue and weakness along with significant musculoskeletal pain.
The kicker of it is.....in my old ignorant days, I would have heard vague somatic complaints like this and would have automatically included psychological factors way up on the differntial diagnosis.
TBD treatment would be a lot further along if more physicians got infected and symptomatic!
Thanks again, Bea.
Posted by Susie R (Member # 30780) on :
It's been a while. Here's our update:
Greg kind of plateau'd on the combo of rifampin and minocycline. Some of his symptoms came back: agitation, a little confusion, mood swings, and anxiety. So on our last visit (a couple of weeks ago) doc decided to treat his Babesia and approach Lyme differently. He's now taking Malarone and also titrating up on amoxicillin---up to 8 gms/ twice a day. He's doing better again on this combo. I still wish he would take better care of his general health, as in diet and exercise and sleep hygiene, but he'll do what he will do.
THE REALLY GOOD NEWS IS......wait for it....I am doing SO much better myself! I've been on minocycline and rifampin for Lyme and Bart and my plantar fasciitis is gone, I am starting to sleep more reliably, my energy is steady, no more bottom crashing out from under me, and now I first can acknowledge how damned sick I was, now that I am feeling better! I am walking 40 minutes a day, taking chair yoga classes 3x/week, doing PT for some weakness, and ramping up on activity. I feel human!
Now I just keep on praying for my son to recover....
Susie
Posted by fflutterby (Member # 28081) on :
That is great news, praying for you both!
Posted by Carol in PA (Member # 5338) on :
Susie, I'm so glad to hear that you're improving!
Carol
Posted by Lymetoo (Member # 743) on :
Wow, that's AWESOME!!!
God Bless you both!!
Posted by momlyme (Member # 27775) on :
That is great, Suzie! So glad you are doing better. I loved what you said about how you can acknowledge how sick you were now that you are feeling better.
I know how you feel! That was me, taking care of my son... I had no idea how sick I had gotten... until I got better!
Prayers for you and Greg... and continued improvement! Posted by Susie R (Member # 30780) on :
Quick note: Greg bumped up to 5 gms. of amoxicillin twice a day and herxed too unpleasantly at that dose. So we are back down to 4 gms. twice a day, plus 1 malarone/day. This is to treat babesia.
He's doing better on this regimen. We go on Thursday to see what his blood level on amoxicillin is at that dose.
Today he is going to his guitar lesson and will be going bowling. He takes a walk about 3x/week. No panic attacks, mentation is clearer. It's clearly going to be a long haul but I remain hopeful.
I am doing GREAT. I walked for a full 60 minutes today and I am not zonked. I haven't been able to do this in at least a couple of years. I love my LLMD....
Susie
Posted by seibertneurolyme (Member # 6416) on :
Susie,
That is great news about your improvement and also Greg's.
A word of caution regarding babesia -- I would ask your doc what the plan is going forward. 1 malarone per day is an awfully low dose. Babesia seems to develop drug resistance more than the other infections in my opinion.
This is the one infection that hubby seems to be losing the war in regards to. We have done low doses and high doses and combos of just about every malaria med there is. Also have tried herbs and some different parasite meds.
At this point I am not really sure what is the best approach and best med for babesia. I do think only being on one babesia med at a time can lead to resistance more quickly and also staying on the same med for years doesn't seem to work for many people.
Most docs are finally after years of denial starting to take the coinfections more seriously.
Good luck.
Bea Seibert
Posted by Larae30 (Member # 35220) on :
Hi Susie! I was just diagnosed with lyme's last week and am feeling discouraged and it is so wonderful to read your and Greg's story. I really wonder how many people are going misdiagnosed, especially children! Wishing you and your family all the best! Lynn
Posted by Susie R (Member # 30780) on :
Update:
Just to remember how bad it was---this kid couldn't go out in public. Yesterday, we exercised together at the PT facility, like a small gym, attached to our primary care medical practice. He enjoyed the exercise and is looking forward to going again after the holiday!
Current tx: amoxicillin 5.5 Gms. twice a day (resulting in a blood level of about 14 ng./ml) and malarone 2 tabs twice a day.
As for me? I continue to feel more reliably energetic every day. No more crushing fatigue. Mind clearing up. No more plantar fasciitis. Able to walk a couple of miles a day and enjoy it. Oddly---remembering dreams like crazy after years of never remembering a dream. I have no idea why.
Oh, and despite killing infectious buggies and having autoimmune disease (spondylitis related to IBD) my inflammatory markers aren't off the wall. I think it's because I'm so careful about diet.
Susie
Posted by Susie R (Member # 30780) on :
It's been a while.
Greg's progress, while continuing, isn't as fast as it was earlier. He is still on Malarone (2 pills twice a day) and amoxicillin 5.5 GMs. twice a day, plus all his psych meds. He felt well enough to go the gym twice in the past few weeks, which is two times more than he's been able to go in the PAST FEW YEARS. Funny, we were at the gym together today and he sweat so much i could smell the amoxicillin in his sweat. It was quite pungent.
I am doing really well. I am a believer in deep intuition, and my intuition tells me it is time to stop antibiotics for myself. I have no crushing fatigue, I sleep well at night, and I don't feel ill. I still have significant arthritis symptoms, but I have been diagnosed with sponkylitis (related to Crohn's disease) and so I have reason for spine arthritis other than Lyme. If the fatigue and sleep disturbance returns, I will reconsider. I plan on going on herbs to stay in remission. (teasel and japanese knotweed in addition to Co-Q-10, alpha lipoic acid, B vitamins, cod liver oil, salmon roe, Brazil nuts, and coconut oil.) I've been a natural healing type for a long time, and have always done a lot of herbal treatments for myself. Which is why I think (in part) I was able to recover so quickly.
May we all be healthy and strong. Susie
Posted by seibertneurolyme (Member # 6416) on :
Susie,
Glad to hear how much progress you are making. The fact that you are remembering your dreams is a good indicator that you are taking enough B vitamins -- especially B6.
Glad you plan to continue on the herbs as I think that is very important especially since you are not symptom free.
You might consider writing Buhner to see if he has any other herbal suggestions. Seems like lately he has been making quite a few changes in his herbal protocols.
Also glad to read that Greg is continuing to make improvements. The babesia especially can take a long time to treat.
Bea Seibert
Posted by Susie R (Member # 30780) on :
Thanks Bea.
Greg has had increase of symptoms in the past week, mostly panic and increased OCD symptoms. These are the symptoms, in my mind, most related to Bartonella with him. They got substantially better initially with rifampin plus minocycline. We stopped those after several months of treatment to switch to Malarone plus high-dose amoxicillin. He is losing ground on this.
The pharmacist told me that malarone can cause panic attacks. Greg is taking a relatively large dose: 2 pills twice a day. Is it the Malarone giving him panic? Babesia die-off? Resurgence of Bartonella? (My guess). I have to call his LLMD and see what he thinks I should do.
As for me, I'm off antibiotics 3 weeks now. I seem to be fine. I started treating myself herbally: my own immune support tonic (ginger, garlic, cilantro, parsley, ****ake mushroom, and oatstraw) as well as polygonum (japanese knotweek) and teasel, the latter two specifically for Lyme and Bartonella. I feel really pretty good. Yesterday I had great energy. I am able to exercise and get all my chores done.
It really hurts my heart to see my child suffering so. He doesn't do anything to really help himself: his diet stinks, he refuses to try sauna or detox baths. I think it will be really difficult for him to recover if he counts on antibiotics to get him well. What can I do? He is 21 years old, after all. And autistic and rigid and stubborn! Lord help us both!
Susie
Posted by fflutterby (Member # 28081) on :
Its just a bump in the road. He will get well too. He has made progress. Don't lose hope ! Praying for Greg and Mom...
Posted by Susie R (Member # 30780) on :
Thank you, Fflutterby... You were right!
I seem to be right that the Malarone caused the panic. We stopped it on the 20th and the anxiety and panic have been subsiding. We have an appointment with LLMD on 2/6, at which time we will discuss what to do. I'm wondering if Greg would have the same reaction to artemisia, the plant? We shall see.
I continue to do well, thank God. I keep waiting for the shoe to drop. But so far, so good. As long as I can exercise, I figure I am ahead of the game.
What a ride. Susie
Posted by Susie R (Member # 30780) on :
Just want to say that I am taking japanese knotweed and it seems to be doing miracles for me. Every day, I have more reliable energy, my sleep has been restoring and uninterrupted for the first time in five years, and my joint pains are decreasing, too.
So right now, besides a deeply nutrient-dense diet, I am only taking Co-Q-10, cod liver oil, and the japanese knotweed and I feel so good! Hard to believe I was sick for 5 years but I seem to have responded to less than 6 months of antibiotics. I hope I don't relapse, but even if I do, this response tells me that my immune system is capable of dealing with my two infections.
Considering how deathly ill Greg was just prior to starting treatment, he is doing pretty well, too, although he is still significantly ill. It's going to take a long time for him to recover. He is most suffering from the killing fatigue and a smidge of confusion at present. The panic stopped when we stopped malarone.
Susie
Posted by Susie R (Member # 30780) on :
First the good news:
I am still off antibiotics and feeling better than I have in years. I took a 60 minute spin class today! No crash. Right now, I am taking japanese knotwood, teasel, sidu acuta, multivitamins, and 81 mg. aspirin. Feeling energy surging up from within like a spring.
Now the not-so-good news: Greg continues to be significantly ill. Certainly not as bad as he was prior to treatment, when he was one step away from psychiatric hospitalization, but still pretty ill. Tons of fatigue. It's very difficult to get him to eat properly, avoid sugar, nutrient dense foods, etc. Right now he's on high dose amoxicillin and malarone.
So we just keep on keepin' on.
Posted by Susie R (Member # 30780) on :
Still feeling good; I am cautiously considering myself a success story.
Did 40 min. of a hard spin workout today and came out energized, not depleted.
From the outside, Greg still looks pretty ill to me, but he says he feels like he is getting better. On one malarone a day and 6gms. of amoxicillin twice a day for now.
Biggest problems he has now: fatigue, anxiety, diminishing but still present brain fog.
Susie
Posted by Susie R (Member # 30780) on :
Three months off abx for me. Still feel good, able to exercise, sleeping well.
My regimen now: japanese knotweed, sida acuta, teasel, cod liver oil, probiotics. I use foods as supplments: 1 brazil nut/day for selenium, 1 TB. pumpkin seeds for magnesium, the cod liver oil for omega 3s and Vit. D and Vit. A.
My rheumatolgist (who did NOT give me a hard time about Lyme AT ALL, bless her) has suggested that I follow a starch-free diet for ankylosing spondylitis. I will see if that will reduce the few symptoms I have left---mostly pain along my right sacroiliac joint. (This is a symptom of the spondylitis)
Greg is making slow progress. He still has cognitive impairments but he has a little more energy and is mood is better.
But he still can't tolerate the malarone--even one pill a day increased his anxiety. So I have him on one artimesinin for now; that's all he can tolerate.
Susie
Posted by fflutterby (Member # 28081) on :
HI Susie, Thanks for keeping us updated. Glad you are doing so well and I pray for Gregs continued progress. Have you tried Cymbalta for Greg? I am on Malerone, Amox, Bicillin 3 x and plaquenil. I am also taking cymbalta. My anxiety has lessened significantly.
Posted by tickled1 (Member # 14257) on :
How is everything Susie? Haven't heard an update in a long time. Hope all is well!
Posted by Susie R (Member # 30780) on :
Had to stop by but am very saddened to hear of Bea's loss.
I am a success story. I have been off antibiotics with only course of treatment and I am doing very well. I feel good...almost 100% and I think I will get there pretty quickly.
Greg continues to improve. He has been on 7 gms. of amoxicillin twice a day (gets him a blood level of about 12.4) and he now has rare flares of confusion. It's so funny----we can tell how he's doing by his bowling average! During the worst of his illness, he lost 30 pins on his average; now he's bowling around 210 and feels he will soon be able get his 225 average back. He is making enormous progress as a musician, too.
He still has considerable fatigue, and he's still quite disabled, but he is not on death's door. I even have been able to get away for a weekend and leave him on his own!
It's been a horrific journey and I'm well aware we aren't done, but I consider myself healed and Greg is so much better than he was, it gives us both hope.
I'm working again (thank you, God!) and so I'm not online all that much but I did want to update this thread and I will continue to do so.
OH....and Greg got a big jump in wellness when i added Buhner's Lyme Protocol herbal concoction to his regimen. Plus artimisenin for the Babesia!
Keep on truckin'. Susie
Posted by tickled1 (Member # 14257) on :
Thanks for updating. I've been wondering about you guys! Glad to hear things are well!
Posted by WendyK (Member # 18918) on :
I just read through your whole story here - several similarities to ours! Myself, hubby and 9yo son are all in treatment for lyme and bartonella, plus babesia for me.
My son has been diagnosed with ADHD, PDD (just shy of Asperger's) and mood disorder (bipolar runs in the family) for 4 years now - and it looks like it has been primarily tick-related all this time! He's been on one of those psychiatric med combos too (risperdone and intuniv). He's relatively early in TBI treatment (started in August), while I'm a year into it.
Both of us have seen improvements, thank goodness! Its encouraging to read about progress for both of you. Oh, and also, we're nearby, also near Albany! Thanks for all the information, I'll keep looking for updates periodically!
Posted by Susie R (Member # 30780) on :
Sending hugs and prayers for recovery for all of you, Wendy.
Just for completeness' sake, here's a summary of what has worked for Greg:
1. Initial (long) course of rifampin and minocycline. 2. Long course of high dose amoxicillin (7 gms. twice a day.) 3. Large quantities of probiotics: 3 capsules of VSL#3 twice a day plus 1 capsule of Florastor twice a day. 4. Artimisinin 1 capsule twice a day three days out of each week. 5. Buhner's Lyme Core Protocal 1 capsule twice a day. 6. Calcium/magnesium tabs 2 at bedtime. 7. Vit. B complex at bedtime. 8. Vit. D daily (5000 IU) 9. fish oil 3 gelcaps daily
This is in addition to his psych meds: lithium, tegretol, lamictal, zoloft, klonopin, seroquel. The good news is that his seroquel dose is now almost 75% decreased. Once he's off that, I'm going to ask his doc to decrease the tegretol and lamictal. His mood has been stable for a long time---more than a year. Anxiety and episodic confusion is still a problem but much much diminished.
Susie
Posted by WendyK (Member # 18918) on :
Thanks for the info! I was hoping that we'd be able to start tapering off either the intuniv or risperdone by now, but in taking the rifampin, which lowered his serum levels of those, and seeing how hyperactive and not in control of himself he became again, it looks like we can't do that yet.
We'll be patient and keep chugging along. The best of luck to you too!
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