posted
Adfter 3 months of testing/treatment all of my daughters tests have come back and it seems to me we have a clear picture of what's going on with her.
Lyme, Babs, Bart, Erlichea, EBV and 2 active pneumonia infections. Candida too.
Inflamation and thick blood. Sorry, not a doc, so don't know correct term.
It makes sense to me now why she has been so exhausted and unable to get out of bed for more than a few minutes at a time.
She's on oxygen now and it really seems to be helping.
My daughter is so sensitive to any abx, that we have to be really careful about doing too much, too fast.
Before we got the latest lab results in , the plan was to do Zith, wait a week add Mepron, wait another week and add Bactrim and really begin knocking out the infections.
But, with the latest lab work results our LLD has her on new meds to deal with everything.
For now she is on Doxy every other day, 1/4 t of Mepron twice per day, diflucan and lots of supplements to support her immune system etc...
Depending on how she is doing at our next visit, she will probably go back on Bactrim and increase the Mepron, maybe the doxy....
I would like to hear from other's who have had similar conditions. What were your protocols? How long did it take to begin seeing some improvement?
Our LLD said it is a like a marathon, you can't see the finish line, but you have to have faith, hope that you'll get there and take it one step at a time.
Any input would be most helpful. Thank you.
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
just follow your daughter's LLD instructions & keep close contact with the LLD.
We are all different, and react differently so you aren't be able to use anything but moral support.
Protocals are different for each & there is no point in getting other people's protocals since your daughter is under a LLD's care.
Why do you need/want to overwelhm yourself?
Too much info can be detrimental to your own peace of mind.
You LLD is correct...it is a marathon. Just hang in there.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- What liver support - and adrenal support - is she doing? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
What your LLMD said......its a marathon! Very true.
2 years into treatment and I am just now starting to turn the corner.
Patience......or you will definetly get overwhelmed.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
She is taking the following supplements: Boluke 2 caps 2 x day Nato 2 caps 2 x day Vit D 5000 IU daily Ruber Zen: Nutrtional/Protein shake daily Fibroboost 2 caps 2 x day Ashwahganda 2 caps 2 x day Activated Charcoal 2 2 x day Chlorella 6 3 x day Querciten 2 caps 2x day Sacro B 2 caps 2 x day Perscript Pro Soil based probiotic 2 caps 2 x day Pure Aloe 1 T 2 x day Buffered C 5000mg 1 x day Rodiola 2 caps 2 x day Lions Mane 2 caps 2 x day
I totally trust the LLD and see improvements. I realize that everyone is different and has varying needs. I was just curious as to what other's have done, what worked, what didn't.
Epsom Salts baths as tolerated Lymphatic drainage as tolerated Lemon water (lots)
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
Is it possible that your daughter is having trouble tolerating the ABX because she is taking quite a lot of supplements which might be taxing her system, especially her liver? Is it possible that fewer should be given and some of the doses cut down? I know that in my own case, when I try out an herbal supplement, I usually can't begin to tolerate the recommended dose and begin (and usually end) with about 1/4 of the recommended amount. I don't have any medical background - just a thought.
Posts: 75 | From Va. | Registered: Apr 2009
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posted
Hello again. First, let me say that my heart goes out to you and your daughter and I hope she beats lyme. I remembered something from the time when I started to take abx. Once I was on abx, I could no longer tolerate any herbal supplements. My eyes would look bad and I would feel like I'd been run over by a truck so for the time period while I was on abx, in my case, I had to give up herbal supplements and "herbal" supplements are the only type of alternative supplement that I've tried. I know that other lyme patients write that they are on a lot of supplements plus abx. My doctor only gave me Vit D and B12 and COQ10 in addition to the abx and I felt great. The doses seem very high to me. Have you discussed the supplements with your LLD? and if they're from your LLD, has your LLD thought of lowering the doses?
Posts: 75 | From Va. | Registered: Apr 2009
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posted
As one mom to another, I think the most important thing is to find an LLMD that you trust. Then, check up on what you are doing and ask your LLMD about it,if neccessary. Trust and verify.
If you try to compare protocols, you will drive yourself crazy second-guessing everything.
As an example, my daughter is on a ton of supplements much like yours. Hers are recommended by her LLMD. She is possibly doing better than she has in a long time, but she has reached new lows now too. Her low occured when she was on the abx from this doc. This is the opposite of another poster. There's just no telling which way your daughter will be.
I've been working on this for more than 2 years and have just now reached this conclusion after driving myself crazy for so long. Of course, we have just now found an LLMD that I trust enough.
Posts: 984 | From US | Registered: Dec 2007
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posted
Thanks for the support and feedback. My daughter is 16. She got bit by a tick when she was 5. The engorged tick was removed from her head and we were told to watch for infection at the site.
Within 3 months she was showing signs of Lyme. Swollen and painful joints, flue like symptoms. If someone had a cold, she would end up in bed for a week. It seems like her immune system struggled with any bug.
She was almost held back in 2nd grade due to missing so much school. She continued on like that for 11 years. This past fall she was so sick, she couldn't get out of bed for months.
We drug her to ID docs and ran every test under the sun. Nothing showed postive. She was diagnosed with post viral fatigue syndrome. I took her to an ND who specialized in CFS and Lyme. Of course her Lyme tests came back positive.
Between October of last year and February of this year, we were taking her to an ND twice per week for Meyers Cocktails and other nutritional IV's. She got so much better and was ready to go back to school in late January.
She enrolled in an online high school, and started making up for what she missed earlier in the year. Within 3 week of starting back to school, she was diagnosed with Lyme.
She started on mino and it knocked her on her butt! She has felt like crap since she started on abx. The progress from the Fall til February seemed to vanish in an instant.
I wanted to make sure that we had the best LLD and interviewed several. We live on the W. coast and I even tried to get Dr. J to see her becasue as far as I am concerned, he is the best for kids/teens. She is too old by six months to seee him. I was willing to travel to the E. coast to make sure she gets well.
I figure after 11 years nnd more than half of her life dealing with Lyme and Co that we've got to get her treatment right the first time.
My daughter loves her LLD and I trust/respect her. This is all so new, and my daughter is sicker than ever. I know it is a slow and winding road. I guess I was just hoping that she would get well quickly and begin getting her life back sooner, rather than later.
I think more than anything I just need some encouragement and hand holding right now. I am scared to death! Thanks everyone!!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
My thoughts and prayers for a speedy recovery for your daughter. She is lucky to have a mother who's willing to do whatever it takes to get her well.
I feel your pain-Im just now starting to get my kids and myself treated-it's scary stuff. Thank God for this message board and the people on it.
Posts: 160 | From NJ | Registered: Dec 2009
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