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
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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
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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
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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
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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)
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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
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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)
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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
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posted
This is good news!
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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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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posted
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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posted
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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posted
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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posted
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
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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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Member # 18524
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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posted
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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posted
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.
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