posted
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.
Posts: 234 | From albany, ny | Registered: Mar 2011
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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 ]
-------------------- 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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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...
Posts: 43 | From Ontario | Registered: Apr 2011
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
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.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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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
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
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.
Posts: 8430 | From Not available | Registered: Oct 2000
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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
Posts: 234 | From albany, ny | Registered: Mar 2011
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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
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
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.
Posts: 13 | From New Jersey | Registered: Jun 2011
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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momindeep
Frequent Contributor (1K+ posts)
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posted
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
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Pinelady
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posted
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.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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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
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
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
Posts: 234 | From albany, ny | Registered: Mar 2011
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momindeep
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Thinking of you both and hoping you will update us on how things are progressing?
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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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.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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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
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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
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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: 6947 | From Lancaster, PA | Registered: Feb 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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momlyme
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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
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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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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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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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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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