PLEASE HELP ME! my mom and I need adivce!!!

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JIJI
Regular Member


Date Joined Jun 2009
Total Posts : 43
   Posted 5/3/2010 9:47 PM (GMT -6)   
Hi I have posted here and you all have always been so helpful. I have been sick since I was 12 for about 9 years now and my mom has been sick for about 2 years. Migraines, nightsweats, tremors, horrible neck pain, joint pain stiffness, I have HORRIBLE calf and bicep, foot, hamstring cramps and pain and much much more. Thank God my mom is finally starting to improve. But I am having a harder time of it. So last year I had a HORRIBLE stomach flu and ever since I have been out of control and have had a whole lot of stomach issues. Horrible nausea, stomach pain and not to mention that I have lost about 55 lbs. I simply cannot eat. It gives me horrible nausea and stomach pain and I am also afraid to eat because every time that I do I get horrible nausea and stomach pain. I am very malnutritioned and have malabsorbtion which means that my gut does not absorb nutrients form food or anything. My family thinks that I am becoming anorexic which I probably am and I just want to be clear that it is NOT because I want to be skinny or anything it is just because eating causes me nothing but pain and discomfort. Everything I eat causes me pain. My gastro guy says that it is probably my Lyme and Bart and all the antibiotics that are causing my stomach issues. I do have some markers for Chron's disease but I have never tested posative for it. My Lyme doc says it is probably all the bacteria also. So my question is this? Do any of you have stomach troubles? If so what do you eat? Are there any tricks I could do? Have you heard of all this type of stomach trouble with Lyme? Do you think it will ever go away? Also random but just wanted to know what you guys thought about massage? I have really bad aching and cramps in my calf and arms and wondered if there were any tricks or something that might help, especially because it gets SO bad at night. Sorry I wrote so much. Any help would be great I get really scared when I have pain and my mom is really scared about my weight. BTW I am on amoxicillin and zithromax right now and have taken pretty much all of the antibiotics in the past including a PICC line. I really hope to hear from you soon! Thank you so much!

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 5/3/2010 10:34 PM (GMT -6)   
Sorry to hear about the terrible suffering you're going through. What are you doing for detox? What do you take other than abx? Do you take probiotics? Are you being treated by a LLMD right now?

I know I haven't given you any answers to your questions, but the more we know about your situation the more it will help us to give you some input and suggestions.

Right now, the number one thing that comes to mind is detox. Seems to me you need to be doing some major detoxing. There's a thread titled, "New to Lyme...Start Here". There's some wonderful detox bath recipes on there. If you haven't done any detoxing I would encourage you to start on this right away.

I'm sure others will be here soon to offer their suggestions as well. Again, so sorry for the suffering you're going through. Praying things get better for you soon!

Gary

Post Edited (GWB) : 5/4/2010 5:58:22 AM (GMT-6)


JIJI
Regular Member


Date Joined Jun 2009
Total Posts : 43
   Posted 5/3/2010 10:38 PM (GMT -6)   
Thanks Gary. To answer you questions I do take probiotics. I don't really do detox I drink alot of ginger tea if that counts as a detox. I feel like every time I try to detox like an epsom salt bath or something that it gives me a herx i don't really know if that is possible.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 5/4/2010 1:52 AM (GMT -6)   
Hi,

Yes, I have a lot of stomach problems - slow stomach emptying, constant battles with nausea and feeling too full after just a small amount of food or water, inability to swallow liquids, constipation, diarrhea, stomach/abdominal pain, etc.

I eat a combination of a meal replacement mix (Alpha ENF www.alphanutrition.com - I have no financial connection with this company/product), 3 foods (I have a lot of food allergies, intolerances and sensitivities), water and meds through my Gastrostomy feeding tube, and also TPN (IV nutrition) and IV hydration via PICC line.

Tricks - well, for one, are you avoiding gluten and dairy? These foods make inflammation caused by Lyme worse, which can cause stomach problems. Also, have you been checked for yeast imbalance (yeast imbalance can occur despite probiotics)?

Other tricks - eat foods that don't take a lot of digestive effort, such as rice, mashed potatoes, cooked vegetables & fruits, etc. Eat small meals every 2-3 hours instead of trying to eat larger meals 3x/day. If you are too nauseated to eat, then try to sip on warm ginger or peppermint tea instead...this may help settle your stomach and also gets liquids into you to help prevent dehydration.

I also find antihistamines helpful - such as Claritin or Zyrtec. If this doesn't help your nausea, then you might try talking with your doctor about other medications that can help with nausea (such as Phenergan or Zofran). Also, homeopathic remedies for nausea may be helpful - such as Nux V. or Ipecac (homeopathic, not the drug store syrup version!). I get homeopathy from a local health food store. Homeopathy can be taken as often as once every 5 minutes during times of severe nausea, and there are no side-effects.

Yes, Lyme can cause gut problems. For details, see http://www.thehumansideoflyme.net/viewarticle.php?aid=62

Yes, once the Lyme/coinfections are under control, the gut problems should improve.

Your message was fine - we are here to help you and are glad you came to us for help and support.

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.


GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 5/4/2010 6:41 AM (GMT -6)   
JiJI,

Well, ginger tea has some benefits, no doubt, but I don't think I would count that as detox. Some people do have uncomfortable experiences after a detox bath but it usually only lasts for a couple of days or so. Two things you could do, one is to cut back on the amount of epson salt you use and gradually build up to the amount in the recipe. Maybe cut back by half or more then build up as you can.

The other idea is to simply use sea salt instead of epson salt. Some people prefer that method over epson salt because they don't want the magnesium in their body as they think it "feeds the bugs". I'm not sure I agree with that, but that's beside the point. The point is, maybe your body isn't capable of handling the magnesium at this time, so you might consider using sea salt and see if that helps. If you still feel like you're herxing, then all I can say is to try to tolerate it until it stops because detoxing our bodies is just too important to ignore.

Have you read the "Hansa Center Update" thread on this forum? It talks about my journey to healing (which I'm still on) using natural medicines. You, in my opinion, would be a perfect candidate for this protocol. It's so much more gentle than what you're doing now with abx. Please check out the thread I started there and read about how I got better (still am) using natural medicine, treatments and therapies. Even if you can't go to the Hansa Center for treatment I would recommend you purchase the book, "Beatiing Lyme Disease" http://www.hansacenter.com/beating_lyme_disease.php

Believe it or not, I was once as sick as you are right now and lost 75lbs in six months due to not being able to eat. It was triggered from steroid shots that messed my immune system up something awful. (By the way, you aren't on any kind of steroids or cortisone or anything like that are you?) Anyway, I didn't get better until I started detoxing. I used some natural remedies that Dr. Jerningan makes Neuro-Antitox ll. He has four different formulas that you can read about here: http://abc.eznettools.net/jernigannutraceuticals/Neuro-Antitox2.html .

Of course, I'm no doctor, and in no position to tell you what to do, that's something better left to the professionals. However, based on my experience, which is very similar to what you're going through right now, your body is crying out for detoxing. I would make every effort possible to detox my body if it was me. I say this based on my own experience. Most of the symptoms we lymies have, which causes us to feel very miserable, is usually due to lyme toxins. Here's an excellent article on the subject: http://findarticles.com/p/articles/mi_m0ISW/is_285/ai_n19170382/?tag=content;col1

For nausea, I took chicory ginger bitters right before eating and it helped me tremendously. I could not eat without first taking this. Plus, this is a great detoxifier as well, and in my opinion, based on what you've shared, your body really needs all the detoxifying it can get right now. This is what I took when I had nausea problems right before eating. It helped me to be able to eat better and gain my strength back
http://shop.urielpharmacy.com/liq-chiginbit240.aspx

Again, very sorry for what you are going through. Hope some of the suggestion Razzle and I have given you will be of some benefit to you. I'm sure others will post their suggestions as well.

Keep us posted

rosesinjanuary
Veteran Member


Date Joined Oct 2007
Total Posts : 748
   Posted 5/4/2010 12:18 PM (GMT -6)   
Hi Jiji
A long time ago I was in your situation, I couldn't eat (so nauseated) if I did eat it went right through me I understand about the anorexia scare, I thought I was just going to die. My weight was probably 80 pounds. But with time, a very good digestive enzyme taken religiously every time I put something in my mouth and lomotil a prescriptions strength anti-diarhea I came out of it. Please if you can don't panic the body is resilient more so than I would have ever dreampt.It might just take some time. I did take a beta blocker which calmed me down because as you say it it is very very scary to be in this situation, I took very small amounts of food and I did not spare that lomotil, and I am here to tell the tale. I am not up on the detox that is popular today, so I can't help there, I assume all the sweating i did was my own body doing the detox w/o any special effort on my part. Please try to relax I remember the fear the body is amazing at how it can take a hellof a beating and come back. I was grateful for the beta blocker as my anxiety was out of control. the beta blocker, with time, lomotil and diligent stomach enzymes I got better. You will be in my prayers, Lisa crazy thing is I started milkshakes strawberry at mceedess ate real slow along with maybe fries and cheeseburger, I just ate real slow by myself (noise drove me nuts) ate only what i wanted real slow and this was helpful. hugs and prayers

great expectations
Regular Member


Date Joined Feb 2010
Total Posts : 53
   Posted 5/4/2010 3:23 PM (GMT -6)   

Hi JIJI,

Nausea, abdominal pain, and weight loss are hallmark symptoms for adrenal insufficiency.  There are of course many causes of nausea, but adrenal problems are not something that most doctors assoc. with nausea right away.  Aching muscles happens with low cortisol from adrenal problems, it can be very painful.  I had horrible nausea for months, lost wt. and all the docs blamed the nausea on lyme, but it turned out to be adrenal failure.

Also In my experience my muscle cramps have been caused by toxins, low potassium and hypothyroid.

Other symptoms of adrenal problems may include imbalance in electrolytes (sodium & Potassium). 

How are your sodium and potassium levels?

Have you had your cortisol or aldosterone level checked? (both are produced by adrenals)

Have you had ACTH level checked?

Have you had your thyroid tested? FreeT3, FreeT4, & TSH?

Blessings,

Paulette

 


Kodak
Regular Member


Date Joined May 2010
Total Posts : 74
   Posted 5/15/2010 11:44 AM (GMT -6)   
I had terrible nausea too with this last flare up. The smell even made me sick. I drank protein shakes. This was easier than eating food and gave me the vitamins and minerals I needed.
Seemed to be mostly in the mornings for me and was a little better in the late afternoon. Eat what you can, drink protein shakes and try to relax. You will get better.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 5/16/2010 10:55 AM (GMT -6)   
JIJI,
I have had issues with my stomach & my intestines similar to what you describe, for quite a few years now. I have tried many different 'natural' products and 'scripts, hoping to just be able to eat when I need, although I always seem to have to go back to using phenergran. I get nauseated instead of feeling hunger, & eating doesn't usually help, 'cause I'm then nauseated because I ate (talk about being a mess!!!). I also seem to get nauseated right around the time I usually go to bed, so I drink a tea that has peppermint in it several nights a week.

I know that it may seem to some here that I am suddenly pushing this(I promise I'm not), but drinking kefir has been a big help to me in many ways. I make my own kefir as it has a lot more beneficial bacteria that way. I have issues with lactose intolerance, but am able to handle the kefir fine, but it can also be made with some soy milks, and even in water. Drinking kefir daily has really eased some of my stomach & intestinal issues.

I also had a lot of muscle cramping & twitching, and quite by accident, I discovered that I had a significant decrease in this after I started taking extra magnesium for intestinal issues.

I'm hope you are able to find something soon that will help you out!!!
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.

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