posted
The following is an email exchange between my 78 year old mother and her LLMD. What is your advice? She is very, very sick and if she cannot take the antibiotic to treat the Lyme and is losing so much weight on the diet, what can she do?
She had the severe diarrhea before starting the antibiotics and got it under control with a prescription of Lotronex from her regular doctor. Now, the introduction of the antibiotics seems to have triggered it again. She only weighed 120lbs. when she started the Lyme diet and now she is down to 106. That has happened within two weeks time. She is so frail and does not need to lose any more weight.
She is suffering extreme muscle pain and cannot walk. Her wrist and arm have swollen and are sore and difficult to use. She is depressed and suffering terribly. Any suggestions for treatment are very much appreciated.
Here is what she emailed her doctor and his response.
I called your office yesterday and left message re changing my prescription for rifampin 150 mg 2 x per day. NAS pharmacy carries the medication in a 300 mgg capsule and could not fill the one you gave me and will require a new prescription. If that is not suitable, we can have the prescription filled at a local pharmacy. However, these antibiotics (doxycycline and cefdinir) are causing me severe diarrhea and nausea. I have lost another pound since we were in your office. (now 106 lbs). The diarrhea has me going 12 to 15 x per day. Today alone I have already been 8 times. I have eaten very little and am trying to abide by the diet, but that too is probably causing the weight loss. Please advise. Thanks.
EDIT- Please do not post the doctor's private email. Thank you. AL
[ 12-08-2009, 11:49 PM: Message edited by: Anna Lee ]
Posts: 34 | From Florida | Registered: Mar 2009
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posted
Well, she may have to adjust her diet to add some carbs. What exactly is she eating or not eating?
She wasn't taking any probiotics (Culterelle) before this?? (uh-oh)
I wish treatment were easier, but it's not. Does she have anything for pain?
I'm so sorry she is suffering so much!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Well the docs advice makes sense to me. You can't possibly take antibiotics while having diarrhea.
She needs to get that all under control, then call the doc back and see what he suggest she do.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
She was taking more than one probiotic with the antibiotics. She also started back taking the Lotronex as soon as the diarrhea began.
She had this horrible diarrhea problem from last September until about April and was homebound due to it. That is when she was prescribed Lotronex but she weaned off of it as it got under control. We don't think that was related to Lyme, but could have been.
She did not have the tick on her for a week until late January and she was already in the midst of the most severe diarrhea imaginable. Now, the diarrhea has returned with its vengeance. It is very difficult to control.
The Lotronex she takes is a rather controversial drug and only prescribed for women with severe diarrhea when nothing else controls it.
I'm worried about how the Lyme can be treated in a patient like this if the antibiotics cause such a reaction. She had finally gotten the diarrhea problem under control when she started the antibiotics and she took the antibiotics with as much caution with the probiotics as possible.
I guess she will just try to do what the LLMD tells her but this stuff is really scary and painful and so hard to treat!
I live in Tampa and she's in Pensacola which is about 485 miles apart. I work full time but will spend Christmas there and try to help her find something she can eat so she will not continue losing weight, etc.
If anyone has ideas/recipes for foods, please let me know. The LLMD has her on no sugar, no fruit, no caffine, no potatoes or rice or bread or pasta, no processed food, etc. etc. There is little left to eat and not much that maintains weight. Thanks for all of your help.
Posts: 34 | From Florida | Registered: Mar 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
At this point I would think it is more important to
get any food into her than worry about the diet
while still staying away from the sugar. She needs
to be sure she is doing something to prevent
yeast. I take Nystain 4 times a day. And have had
no problems with the probiotic Creon. I had
diarrhea for over a year before I found Lyme. I
would also stay away from foods like beans that
stimulate the bowels. I also ate a load of yogurt
when I first started meds. Now I do as I like. If
you are that far away you could get home health
to make sure she is eating and comfortable.
-------------------- 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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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
It sounds like she has c diff from the abx. She needs to get that under control then take abx that control it while treating other things.
I'm in the same frustrating boat. Here's a paddle...
Posts: 1104 | From N.California | Registered: Jan 2008
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posted
Here is a post I made awhile back with suggestions for weight lsos:
My husband had real issues with weight loss (due to Babesia). I have a few things in my bag of tricks for you to try if you haven't already.
Lemon/olive oil drink:
1 whole lemon 1 Tablespoon olive oil
Blenderize whole lemon, olive oil and 1 cup of water. Pass the mixture through a strainer and drink up. This drink was created by Mark Konlee who was helping AIDS patients with wasting and neuropathy. http://www.keephopealive.org/lemondrk.html
8-12 oz rice, almond, oat or coconut milk 2 Tablespoons of Rice protein powder 3-6 grams L Glutamine 1 teaspoon carob poweder 1/2 or 1 whole banana or papaya 1/2 cup frozen berries 1-2 capsules quercetin 1/2 tsp raw honey
Mix the above in a blender.
Carob/bananas replace electrolytes L glutamine repairs the cells lining the digestive tract Berries help heal the digestive tract Rice protein and L Glutamine provide amino acids and proteins which are lost to malabsorption
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
Apart from the suggestions above, I would add the carbs back into her diet. My husband had diarrhea and weight loss as one of his Lyme and/or babesia symptoms.
The low carb diet definitely did no favors to him and after he lost more weight we took him off of it. He has never done a low carb diet but is now almost recovered. He did go gluten free though - gluten can be a cause of many intestinal issues.
A clean diet is important but I would have her return to her old diet and see if she can get the diarrhea resolved. Then she can slowly work on removing processed foods, then gluten, etc.
Posts: 984 | From San Diego | Registered: Nov 2006
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