posted
Our son almost 16 was dxed with LD/Bartonella this past fall after I found the tick on his back. He is seeing an LLMD in D.C. He has been on Doxy/Rifampin since that time and has totally changed his diet and supps to follow his LLMD's protocol. Our son homeschools so we can be flexible, but the last 2 weeks he has been in bed 20 hours a day sleeping. I started Eleuthero drops this past Friday. Schooling is not happening. His chronic fatigue is the worst I have seen. We usually have 2-3 good days and then down for 4-5 days. Not now.
The LLMD said we would discuss B-12 injections as a possibility at our May appt., but to try other things in the meantime. Any suggestions for what has helped you?
Posts: 54 | From Texas | Registered: Oct 2010
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posted
does he exercise a bit? This is a really important aspect to recovery. Also how is his detox? epsom salt baths, lemon water... What kind of symptoms does he experience? ODes he have any pain, headaches?... Was he tested for food allergies?
Posts: 723 | From Montreal | Registered: Oct 2010
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Shahbah: He does epsom salt baths daily since this has been going on. We know his allergies/sensitivities. No pain, just mental fog with CF and once he has had a bad headache.
Lymetutu: hi there! LLMD says to try Eleuthero and then try CordyMax or mushrooms coriolus and then update.
Posts: 54 | From Texas | Registered: Oct 2010
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I was (am) in a similar situation. 19 years old, crushing fatigue is my main symptom. Treated for Lyme, Bartonella, and now Babesia.
The Babesia meds (malarone) seem to be making a difference, I currently feel better than I have in the past 8 months. (knock on wood)
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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Chronic fatigue is not my main symptom, but I have found success with B12 injections in increasing my energy and (somewhat) clearing the brain fog.
-------------------- Contracted Lyme 1999. Diagnosed January 2011.
"The seed of suffering in you may be strong, but don't wait until you have no more suffering before allowing yourself to be happy." � Thich Nhat Hanh Posts: 64 | From North Carolina | Registered: Jan 2011
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Chronic fatigue is my 17 yo daughter's most disruptive symptom. Prior to her lyme diagnosis she was sleeping 20 hours a day.
When she first began treatment she was also in bed, but it went up to almost all day long.
1 year into treatment and she can get out of bed and actually do things. She had to drop out of high school at the beginning of her sophomore year and missed an entire year.
She is on a home/hospital based tutoring program and still can't go to school. We are hoping that she will complete the 3 classes she is taking this year, and will be able to do running start.
Her fatigue waxes/wanes but when she's herxing it gets really bad. She too follows a good diet and takes many supplements to support her healing. However, we just got new labs last week that are showing a systemic candida/yeast infection.
So now her diet will be even more strict. Only meat/veggies and some grains on occasion. I am now wondering if she has been struggling with yeast all along, and that with treatment, that her fatigue will go away. At least that's the light at the end of the tunnel. She does't have thrush or any external signs of yeast. But, the crushing fatigue can also be caused from systemic yeast. Has your son been tested?
Some of the things we've tried are: ATP Fuel by Researched Nutritionals. Eleuthero. Vitamin B-12 shots (which seem to help a lot) Transfer Factor Multi Immune, Siberian Ginsing. For detoxing we have tried Chlorella, Apple Pectin, Charcoal and Bentonite Clay. She is now trying Tox-ex drops.
If it wasn't for the fatigue she would be able to functon. I know how debilitating it can be. It sounds like you are doing everything you need to. It may be that he is toxic and needs to detox more. Is he drinking tons of water? I have also heard that colonics are supposed to really help. I am working on convincing my daughter to give it a try. Not sure that I'll be successful.
Good luck in finding something to help the fatigue lift. Please share if you find something that works!
Best wishes.
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
quote:Originally posted by texanmom3: We usually have 2-3 good days and then down for 4-5 days. Not now.
Texanmom, I just reread your post. Just that 4-5 day cycle alone would make me think Babesia.
Please let us know how he's doing. He'll be in my prayers.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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I will mention babesia to his LLMD, but I was told by the LLMD before that babesia was not something he had.
I will test for candida and continue the epsom salt baths since they seem to help a bit. Eleuthero--my son has noticed no change since we started that 5 days ago. I should give it time though.
Posts: 54 | From Texas | Registered: Oct 2010
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Eleuthero actually made my daughter's fatigue worse, but that doesn't seem to be the normal reaction to Eleuthero--hopefully it will work for your son.
Cryptolepis (herb for Babs) did seem to help a bit, and I will be adding that back in, since LLMD still refuses to treat Babs.
Have his iron levels/Ferritin been checked? Perhaps anemia?
Please keep us posted.
{{{HUGS}}}
Posts: 648 | From northeast | Registered: Feb 2009
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Just heard back from LLMD. LLMD is taking our son off abx for 3 weeks and doing a cleanse. We will be adding the eliminated foods back in one at a time to see if he has developed any allergies, but feels there is a toxin overload to his system and we need to detox as well as rebuild. He is ready to feel better and am glad we have a plan! I will keep you posted as we work through this.
Posts: 54 | From Texas | Registered: Oct 2010
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amomwithhope-thank you for the tips. Yes, his iron is fine right now. He gets monthly blood draws ordered by the LLMD. That is a good thing to think about with fatigue though (low iron).
Posts: 54 | From Texas | Registered: Oct 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
HI texanmom3:
Our 11 year old daughter has Lyme and Babesia.
She had the crushing fatigue at the beginning. We are now into month 10 of treatment and while she still has chronic fatigue it is no where near as bad as initially.
She didn't sleep 20 hrs. but we had to carry her around the house. It took a few weeks but the mepron and zith started to help with this.
She has been negative for all her babesia tests but had all the symptoms. Now we all know Babs, Bart and Lyme have multiple symptoms but she had the night sweats, day fevers, headaches, bone pain, breathing issues, anxiety, etc.
Its best to treat Bart b/4 Babs and I don't know if your son has Babs as Lyme can produce CF.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
texanmon
One other item but normally those with chronic fatigue are deficient in the D3 level. You need to raise this to the 80 range.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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I'm unable to take abx and just started Byron White remedy for Mycoplasma and I'm getting strong Chronic Fatigue symptoms. I'm also pretty sure we'll need to treat Bart as well. The CFS stuff usually is not so strong in me, but even the tiniest dose of A-Myco is kicking my butt around the block!
Good luck teasing it all out.
wiserforit2
Posts: 273 | From Banks of the Hudson | Registered: Nov 2008
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17hens
Frequent Contributor (1K+ posts)
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posted
quote:Originally posted by texanmom3: I was told by the LLMD before that babesia was not something he had.
To LLMDs in general, how can you tell someone that "babesia is not something you have?" How do you know this for sure? No one knows for sure with this illness.
Please stop closing doors for sick people when the doors must be opened and explored instead. How else will we get better?
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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There is no 100% test for Babesia... They do have certain strains tested by my LLMD said there are 17 strains that are not tested. My daughter has all Babesia symptoms and he is treating her for it without the positive test..
Posts: 163 | From Central New Jersey | Registered: Jan 2010
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texanmom3 - What tests did your LLMD do? Did your son ever get tested through IGENEX by your LLMD? My son tested positive for Babesiosis on the FISH test.
Posts: 8981 | From Illinois | Registered: May 2006
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
That sounds like classic babesia: crushing fatigue, oversleeping and one week cycles.
When you attack one infection, another one will emerge and take over. That is what happened to me and many other people. Some doctors think it is just a herx or inflammation, but it isn't.
Many times people do not present the most obvious symptoms of babesia like drenching sweats and fever. I didn't. But I tested positive for it after three years of treatment. If ONLY it had been recognized earlier!
Look for other symptoms like depression, anxiety, lack of motivation and inability to concentrate - does this explain the stand still in school?
The first thing I learned about treatment is that I must be my own advocate. I cannot trust anyone to know what is best and that includes the LLMDs.
Many times they have a recipe for treatment that does not fit the current situation. More and more I hear of people stuck in the rut of a treatment protocol that does not address their primary infection. How can they improve? It is impossible.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Our son was tested by IGENEX through our LLMD. We trust our LLMD and at the same time, I live with my son and he knows his own body best and our LLMD is responsive to what I report through our journaling of our son and also the conversations my son has with his LLMD. We are going to take our son off his ABX for 3 weeks and detox him by the LLMDs recommendation and see if that helps, if we still are seeing issues to the extremes in which we are seeing, we will move to the next thing.
Our LLMD made the comment about Babesia at the very beginning of treatment based on testing and clinical assessment. I saw no signs of it either. Could it be manifesting now? Possibly. Babesia is not off the table for me, we are just taking this step next.
It is a process as someone mentioned. These bacterias/parasites are nasty and affect each individual differently and each body responds to different supplements/drugs differently. It is a beast of an illness. I am grateful that we can all share our ideas and what has worked and not worked for them personally. I am grateful for the input and anything else you might have to share!
Posts: 54 | From Texas | Registered: Oct 2010
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Hi Texanmom, How is your son doing with his 3 week break? Is he feeling better?
My dauhgter has been off of abx for 2 1/2 months now. She's still feeling really poor. FATIGUE!!
We decided to go to a practitioner who does ART and has for 15 years. She did the first round of testing and had me send all of her labs for the last 12 months. She is going to review them and we go see her next week.
She is really into the Klinghardt methods and thinks that we now that we have been killing bugs for a year with little improvement that it might be time to treat parasites and improve her terrain.
Someone at our support group mentioned that Dr's seem to either treat with Napalm or Voodoo, that it's one exreme or the other. I spent the first year going the Napalm route.
I think that I may spend the next few months exploring more of the alternative routes and see about getting her body strong and functioning at it's best.
My thought is that then her body may be able to handle some of the bug killing on it's own, and then start again wtih abx.
Not sure what we'll do, but that's the route I'm leaning.
Hope all is well. Please give us an update on your son. Take care.
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
17hens you wrote about adrenal support, what in particular do you think of? thx
Posts: 140 | From Germany | Registered: Feb 2011
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
I struggle with this also after a year of treatment and my fatigue was much worse while treating Bartonella. However, I found some other issues that are probably contributing.
Ebstein Barr Virus (Mono)- is the main cause of chronic fatigue in people without lyme disease.
Adrenals/Thyroid issues-I have very low DHEA, a very important hormone and am supplementing.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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posted
In my household, the LLMD determined that the crushing fatigue was related to babesia, particularly since the cough, "air hunger" were also present. (Confirmed in positive lab tests and symptoms eased with mepron.) Bartonella symptoms became more obvious after the babesia symptoms began to subside. (Once again confirmed in lab tests.) It may take several rounds of testing to find everything if there a multiple infections.
Also consider that if someone isn't eating regularly, not physically active, and not exposed to sunlight, then vitamin deficiencies may develop. (This can happen even without the stress of a TBI on the body.) Your doctor could order lab tests for B and D deficiencies in particular.
Best Wishes for improved health to all!
Posts: 170 | From New Jersey | Registered: Jun 2008
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posted
My 14 year old son has the same issue with fatigue.His isn't too bad but he still can't do a full week at school and often misses Wednesdays/Thursdays and can't do sports. He has Bartonella, Lyme, Chlamydia pneumoniae and some elevated viral titres. He also has a genetic detox problem. He has just started treatment with Bactrim DS and his fatigue is much worse. We are also exploring other options to help with the fatigue eg. cranial osteopathy (Perrins technique) and soon some homeopathy.
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