posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
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.
Posts: 8430 | From Not available | Registered: Oct 2000
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fflutterby
Frequent Contributor (1K+ posts)
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posted
Can you take it with rifampin though ?
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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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
Posts: 234 | From albany, ny | Registered: Mar 2011
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
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.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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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.
Posts: 234 | From albany, ny | Registered: Mar 2011
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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
Posts: 234 | From albany, ny | Registered: Mar 2011
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fflutterby
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posted
That is great news, praying for you both!
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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Carol in PA
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Susie, I'm so glad to hear that you're improving!
Carol
Posts: 6949 | From Lancaster, PA | Registered: Feb 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96237 | From Texas | Registered: Feb 2001
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momlyme
Frequent Contributor (1K+ posts)
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posted
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!
-------------------- 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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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
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
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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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
Posts: 234 | From albany, ny | Registered: Mar 2011
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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
Posts: 234 | From albany, ny | Registered: Mar 2011
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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.
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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fflutterby
Frequent Contributor (1K+ posts)
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posted
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...
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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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
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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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.
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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fflutterby
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posted
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.
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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tickled1
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posted
How is everything Susie? Haven't heard an update in a long time. Hope all is well!
Posts: 2541 | From Northeast | Registered: Jan 2008
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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
Posts: 234 | From albany, ny | Registered: Mar 2011
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tickled1
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posted
Thanks for updating. I've been wondering about you guys! Glad to hear things are well!
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
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!
-------------------- Wendy Posts: 253 | From Near Albany, NY | Registered: Jan 2009
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
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!
-------------------- Wendy Posts: 253 | From Near Albany, NY | Registered: Jan 2009
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