posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
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.
And has no transmission problems!!
MADDOG
Posts: 3996 | From Ohio | Registered: Oct 2000
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momindeep
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Member # 7618
posted
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
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
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
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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"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.
Posts: 797 | From New York | Registered: Feb 2008
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
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.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Welcome! It's gonna be an uphill battle but now at least there's an end in sight.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6144 | From Columbus, GA | Registered: Jul 2004
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
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.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
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!
Posts: 2541 | From Northeast | Registered: Jan 2008
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
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.
posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
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
Posts: 256 | From Boston, mass | Registered: Jan 2008
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
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.
Posts: 8430 | From Not available | Registered: Oct 2000
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
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
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Tricky Tickey
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Member # 26546
posted
Susie R, thank God you're here!!!!!!
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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posted
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... Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
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
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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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.
posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
There is a definite trend towards diminshed agitation, diminished depression, and decreased confusion and brain fog. Day 21 of amox. + probencid today.
Susie
Posts: 234 | From albany, ny | Registered: Mar 2011
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
You must be so hopeful...keep us posted on what is going on...this is interesting at the very least.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
Remember that day 21 on is herx territory, so don't be surprised if he gets worse temporarily.
Posts: 8430 | From Not available | Registered: Oct 2000
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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
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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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
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
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.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
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.
-------------------- Ecclesiastes 4:9-10 Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. Posts: 338 | From NEPA | Registered: Mar 2011
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Susie, I know your fear.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Yes, kind of you to remember...she is improving and I hope someday I can breathe again.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
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.
-------------------- Ecclesiastes 4:9-10 Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. Posts: 338 | From NEPA | Registered: Mar 2011
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
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.
Posts: 3905 | From USA | Registered: May 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
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.
Posts: 3905 | From USA | Registered: May 2007
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
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.
Posts: 227 | From Northeast | Registered: Mar 2010
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
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
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
That is so awesome!
Here is to many more!!!!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Ahhh...so very encouraging!
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I am so glad this appointment went well!!! Yeah!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
This is good news!
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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