Lost and sick PLEASE HELP!!

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JIJI
Regular Member


Date Joined Jun 2009
Total Posts : 43
   Posted 5/18/2010 8:27 PM (GMT -6)   
Hey guys I have had Lyme for 9 years now horrible pain in general ya know? bad head pain/migraines, muscle pain especially in my calves, hamstrings, biceps and forearms. Most recently horrible back pain, nausea and stomach pain. I have lost almost 60 lbs. My mom and fam thinks that I have anorexia because I don't really eat. Not for attention or for body image but becuase it is so unpleasant because of the nausea and stomach pain that it causes. I eat like a few bagel chips a day and like a few spoons of pudding or dry cereal at night I know it is bad but what can i do? I feel like I want to eat normal or not at all. I have really bad malnutrition. I have hair loss and have not had a period since Feb(sorry for the TMI). My mom is afraid that I will die from the malnutrition. What do you guys eat? Detail would be great. I take zofran nexium domperidome and iberogast for my stomach. I have tested for chrones disease and had some markers but never full on. Both my stomach doc and my LLMD think it could be the lyme or bart bacteria. I have had all the standard antibiotics from biaxon to bicillin injections to a PICC line for 7 months of Doxycycline, rocephin and one more that i forget. Most recently I was taking amoxicillin and zithromax. On Fri I got really sick with horrible head pain and diarrhea I thought I was going to die, honestly. My LLMD told me to stop everything for a few days. So I am going to the doc tomorrow to figure out what antibiotic to do seeing as my stomach is so sensative. Sometimes I just feel like giving up. Do you guys maybe have any suggestions of some antibiotics I could suggest tomorrow at the doc? Or maybe any questions that I should ask my doc? I just dont know what to do. I am lost. I really hope you guys see this before tomorrow. Please help. Thanks-Sandy

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 5/18/2010 9:04 PM (GMT -6)   
Oh my gosh, Sandy, I hardly know what to say, except I am sorry and will include you in my 'Lyme Prayers'. Your 'LLMD' MUST help you! IF he has to research natural remedies, then so be it.

Are you saying that IV abx have torn up your stomach? I thought IVs helped avoid the stomach issues? The last LLMD that I saw proposed/considered 1 weekly injection of penicillin for many weeks. Afterall, this is very effective against syphillis. When I asked about the advantage, he said it would 'bypass' all the stomach issues.

This, of course, does not include treating any co-infections you may have, which can render any lyme treatment useless.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


rosesinjanuary
Veteran Member


Date Joined Oct 2007
Total Posts : 748
   Posted 5/18/2010 9:16 PM (GMT -6)   
poor thing
 
never take mi advice but this is what I'd do. go to doc, u are. Consider going off abx for a bit. eat small eat slow never eat without a good digestive enzyme.  If food is just going through u get script anti-diarheal i used lomotil.  Pain ask doc for help. I am considering pain pills again but am trying tohold out.  good luck u are in mi prayers as well.
 

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 5/18/2010 11:48 PM (GMT -6)   
+Lyme,
 
IV abx do bypass most but not all the stomach related side-effects. I've had nausea as a side-effect of abx., and I know that sometimes people can get diarrhea from the abx killing off the "friendlies" (probiotics are needed to prevent this). IV abx do not bypass stomach-related herxing.

Jiji,

I'd suggest doing anything you can to get the toxins out that are contributing to your feeling so uncomfortable.  Detox methods are described in the thread at the top of the forum for those New to Lyme.

Also, ask your doctor for IV fluids so you don't become even more dehydrated - dehydration can cause severe muscle pain, kidney failure, and make your other symptoms a lot worse also.

For the difficulty eating, try a liquid meal such as Boost or Ensure, even SlimFast has good nutrition in it.  Chill it first to make it more palatable.  I know it has sugar, but that beats starving to death, and right now your body would probably absorb all of the sugar anyway.

Another idea is to try a Homeopathic remedy called Nux Vomica - this remedy helps with a lot of the stomach symptoms you describe.

Ginger Tea is another thing to try to help settle your stomach.  Take 1 inch of fresh ginger root, peel it, place it in 2 cups of water in a pan.  Bring the water & ginger to a boil, then turn it down and simmer for 10 minutes.  Cool.  Sip this tea as often as you feel comfortable doing so.  It should keep in the refrigerator in a sealed container for up to 48 hours.  Always sip it warm...it is more effective this way.  You can add a bit of Stevia or Agave to sweeten it if you need to.

I hope this helps - take care,


-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.

Post Edited (Razzle) : 5/18/2010 11:56:11 PM (GMT-6)


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 5/19/2010 8:04 AM (GMT -6)   
Sorry you're suffering so much, but I need to stress, you HAVE To force yourself to eat.
Your body CANNOT get better usless it has the fuel to get better.

Are you detoxing and taking probiotics?

I would suggest not taking any abx for now to give your poor body a break. You need to work on your nutrition. If not, abx are not going to help you at all.

Are you able to force yourself to eat?

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35706
   Posted 5/19/2010 12:21 PM (GMT -6)   
I agree with Razzle & Peacesoul.
I don't feel like I have much to say, as I have never been on IV abx., although I did go through a period where I just couldn't eat, couldn't swallow once I had food in my mouth. It was like my throat would just 'lock'. My very wonderful hubby was so willing to work with me, encouraging me to just take quite literally, one more bite than I did the day before.

I'm also a big believer in detoxing. I had to start very slowly with that as well.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


JIJI
Regular Member


Date Joined Jun 2009
Total Posts : 43
   Posted 5/19/2010 9:43 PM (GMT -6)   
thank you everyone for your support. I do take a ton of probiotics and it has like a few of the good bacterias i take like 30-50 billion a day. I went to the doc today he started me on ceftin mepron and zithromax. also he gave me nystantin just in case it is yeast and hydocodone for the pain. The eating is still dreadful I just had a little pasta and now my stomach is hurting really bad. My doc also told me to try to work out at night when im herxing or detoxing or whatever because it might help. he was not happy with my lyme at all so i hope that this new stuff will help.I really appreciate and love all of your help thanks.-Sandy

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 5/19/2010 10:21 PM (GMT -6)   
Marshmallow root shouldn't interfere with your meds if taken 2 hours apart from meds, but will usually soothe an inflammed or irritated stomach. I used to take Nature's Way brand purchased at a local health food store - 1-2 caps 2-3x/day. This herb creates a coating that is soothing and healing to the gut lining...this is due to the herb's mucilagenous properties. Other herbs that do similar things are Slippery Elm Bark, Licorice Root (be sure to get the DGL form or else it could spike blood pressure), Burdock Root (warning: this herb can act as a laxative), and many others...but of all these herbs, marshmallow root is the most gentle and benign. For more info about Marshmallow root, see http://www.florahealth.com/flora/home/USA/HealthInformation/Encyclopedias/MarshmallowRoot.htm and http://www.umm.edu/altmed/articles/marshmallow-000265.htm (I have no financial connection with these websites/companies - I just found them using Google...).

Take care,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


Jeminij
Veteran Member


Date Joined Dec 2005
Total Posts : 1335
   Posted 5/20/2010 6:50 AM (GMT -6)   
Before I was diagnosed I too was unable to eat. I am a picker eater to begin with, but when I graduated college at 23 I weighed 114lbs. My family too thought I was anorexic, but I just wasn't feeling well and everything I ate made me sick. I even developed a small fear of food because I thought the food itself was making me sick. I kept going to my dr telling him I didn't feel well and was losing weight. He told me I had emotional issues and that losing a few llbs wasn't anything to worry about. I tried to tell him that it was a big deal when I was only 114lbs (I normally weigh 125-128) so this was small even for me. I was diagnosed 3 years later with lyme and once I started meds (Biaxin and plaq) I wasn't able to eat anything. I mean I lived on bread and water and ever now and again I would try mashed potatos or eggo waffles, but for the most part I couldn't eat anything nor had any desire to eat anything. I eventually went down to 104 lbs which really scared me because I too thought I was going to die. I ended up in the ER one night and they told me my body was literally eating itself. It really scared me, but I was just too sick to eat. I was on meds for 26 months before I got totally well. At about 6 months in I was able to eat a little bit more and I just slowly tried to eat more as the months went on and eventually I got back up to about 120 lbs. I have a very sensitive stomach to this day but as I got better my appetite did too.

I suggest eating what you can and drinking lots of water (to flush out the toxins). I also used to take 3 days off from my meds whenever my stomach acted up. This was fine with my dr and I did it as often as I needed to. They can be so hard on your stomach to take. I always took my meds with bread and a full glass of water. This helped greatly.

It just took time and it can get better so hang in there.

peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 5/20/2010 8:05 AM (GMT -6)   
If you do have yeast, and you more than likey do with all those abx, you should not eat pasta.
You need to eat foods that will not promote yeast.

No sugars, no carbs. Try to eat clean foods like clean proteins and veggies.

And please forgive me, any doc that tells you to work out when you are malnurished is NOT a very wise doctor.
You should not exercise AT ALL unless you are eating.

You also need to detox.

To get well, you need to follow some protocols or you will not get well
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