posted
Hi everyone...I just got power back after being out for over 72 hrs. During the hurricane, I got much sicker with intestinal issues(vomiting, other fun gastro issues), vertigo and just feeling very weak all over. I also had a hard time walking. I am flaring and / or herxing for some reason. I did just start zithro for h pylori treatment so perhaps that is a factor. I am 79.4 pounds as of 20 minutes ago and I am scared to death.
My ex boyfriend who stayed with me throughout the storm was reduced to tears and he is a big tough man that does not scare easily. I am at a loss as to what to do. I am on bicillin shots 3 times a week, the h pylori treatment and tons of probiotics. I am just so ill and so sick to death of being sick.
Any suggestions? My dr wants me to go IV and to do it for up to a year. I am torn between that and seeing a naturopath. Any imput from anyone who has gone through similar stuff would be so appreciated. Thank you. jess.
Posts: 651 | From ct | Registered: Sep 2011
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beths
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Member # 18864
posted
I get vomiting weakness and vertigo from babs. Have u treated it? I too have lost a lot of weight
Maybe a 2nd LLMD opinion?
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
Beths-I am def serum positive for babs from igenex and quest labs and I have TONS of other coinfections too. I have taken artmesia which made me insanely sick and since I am allergic to mepron, not much else for babs.
I am supposed to see a world renowned llmd for a second opinion soon..I have to say though, after a bit of a rough start I kind of love my llmd now. He is incredibly invested in my case and has shown me immense time and consideration. I might still get the second opinion, but I will prob stay with my current dr. Thanks, Jess.
Posts: 651 | From ct | Registered: Sep 2011
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posted
79 pounds is an emergency. are you eating what you can? have you given up the dtrict diet? i'd be looking for another opion ASAP.
Posts: 342 | From Philadelphia | Registered: Dec 2011
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posted
Hi Jessie-yeah i think its down partially because I barely ate for almost 2 days at the beginning of the storm..and what I did eat I had a hard time keeping down. I am eating something right now as I type this. My llmd actually has wanted me to be on a feeding tube for awhile but I have been fighting him. If I cannot bring my weight up though, I will have no choice.
What scares me is how rapidly I lose weight..i know part of it is dehydration prob but damn...pounds just pare off me like nobody's business....ugh...Thanks for the imput. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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posted
Clindamycin/quinine or artemisinin/zith may work!! Go easy on the ART since you are sensitive.
Can you see a gastro for the weight loss?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Jess, I know you suspect that your symptoms are caused by Babesia, because you've posted that before. You are right, and if you don't get this infection under control, you are in big trouble.
We all have tons of co-infections. Babesia is the cause of all the symptoms you list. The vomiting/GI symptoms, wasting, weakness, vertigo...
If you have the B.duncani strain, you will get sicker much faster. It's an extremely virulent pathogen. It can also cause allergic reactions to anything. Do not become allergic to antibiotics!
How do you know you are allergic to Mepron? Hives? Many of our pathogens are histamine sequestors, so an early die-off can release a lot of histamine into your system. That can cause all kinds of scary symptoms, and you need to be careful, but it may not be a true allergy.
My husband and I had all the symptoms you list when our Babesia infections were prominent. I vomited for an entire year. I was allergic to everything and in a completely catabolic state (muscle wasting). I weighed next to nothing during the worst years of my infection.
This all turned around with appropriate treatment.
I'm glad you like your LLMD, but I question how much he really knows about Lyme and co-infections. There are MANY meds/herbs that treat Babesia.
Many of our infections are potentially fatal, but B.duncani is the big one. It's a bad actor. All of your organs and glands are under assault right now. I've seen adrenal crises, respiratory failure and heart failure in untreated or poorly treated Babesia cases.
I'm not trying to scare you (probably an epic fail with that one), but you need to take action. Whether it's with your current LLMD or another one doesn't matter. You simply have to get this under control.
I alternated between feeling absolutely great and absolutely awful during my first year of Babesia treatment, so it may not be all bad. But it's mostly bad. But you've got to stop going downhill.
I don't want to offend you with this, but another aspect of Babesia infections that I've noticed in people is the inability to do appropriate decision making. I think our frontal lobes are extremely compromised.
Babesia-infected RBCs adhere to the endothelial layers of capillaries and severely restrict blood flow. This can be especially pronounced in the brain, as the immune system's activity in the brain is different from the rest of the body.
It doesn't mean you're not smart. (I know you are.) And you may not feel cognitively impaired. But you are.
I see this all the time. I consider it a symptom. Maybe this pathogen evolved a defense mechanism that makes us complacent or indecisive. Who knows? Weirder things have happened.
I hope you will take this seriously and figure out how to get your Babs treated. You really can't afford to get much sicker.
I don't mean to be so blunt, but I am really scared for you.
posted
Thanks boxermom, I appreciate it. I agree I have to act now. Thanks kudzu-yes I see my internist once a week. She is always very concerned about me. I will look into treating the babs as soon as possible..
.Btw, I had an anaphylactic reaction to mepron and that is why I cannot take it. My throat started to close and I needed an epipen to breathe properly again. Thanks again for the concern. I am def taking this seriously and want to get well as soon as possible. I feel really frail and I know I cannot afford to stay in this position. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Your weight seems dangerously low. Besides your LLMD have you seen anyone else, gastro? Had any other tests besides lyme? Have you been tested for celiacs?
I think it's important to be sure all your symptoms are from lyme and not from something else as well. If you have not had one I would encourage you to have a full GI workup to r/o other possibilities.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
Ellen, I have had TONS of GI testing...2 endoscopies this yr alone.."non specific inflammation" is all that is usually found. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I lost a lot of weight with B. duncani. The doc who finally got this kicked was treating lyme and babesia at the same time. IV and pills/liquid. Even if you are allergic to mepron, you can still treat this. However, the neurologic infection will affect the nerves of your GI tract, and so lyme could easily cause the vomiting, etc, even without any babesia involvement. If you can't keep food down, weight loss results.
My vote would be for IV at this point, but I think you will have to be careful with the herxing. Maybe lower dose or pulsed. It is definitely easier on the GI tract.
[ 11-02-2012, 10:46 AM: Message edited by: poppy ]
Posts: 2888 | From USA | Registered: Mar 2004
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posted
How about protein shakes/Herbalife shakes? They could add some much needed extra calories along with some nutrients that may be missed in your diet.
"I am just so ill and so sick to death of being sick." - Everyone here knows exactly what you mean!
-------------------- ---------- Danni Posts: 311 | From Glen Mills, PA | Registered: Jan 2009
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Summer3
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Member # 35286
posted
I agree that the weight loss would seem to be the top priority. Do you continue to lose weight off antibiotics? Is it possible to take a break from meds or add in foods that we are supposed to avoid just for the sole purpose of gaining weight?
I am OCD about not eating sugar, dairy or gluten, but even my LLMD at one point told me to eat pretty much anything I want because losing any more weight would be more harmful than the effects of eating less than ideally.
Good luck. I'm scared for you. I think if taking a med break was not an option, I'd definitely do IV meds to give the GI system a break.
nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Jess, just praying for you...
I have no great ideas,except I could usually drink a shake or ensure or Blizzard at my worst... then the turn around later and weight popped on..It's shocking, either way,
We would put protein or amino acids in some shakes ,so I wouldn't taste that part and could usually keep it down or turn head to drink from straw even when I could only move to tinkle.
nonna
this is one mean disease , or should I say diseases?
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
I too have lost tons of weight. But I have finally gained a few pound the last two weeks after 1 year. I added a homeopathic doctor that is Lyme literate he took courses with Dr K. He uses a PEMF and some light therapy. Organic garlic and does something similar to Art testing and gives me some drops. I also added accupuncte. I am rotating some sleep meds. I would add a protein shake. I would also add aloe Vera juice. Organic ginger and organic peppermint teas. Start slow or small doses. I don't know what meds you are on but you can probably take a few days brake and maybe pulse for Babesia. I too have b duncani. Maybe herbs or malarone? Take care! Take care!
Posts: 697 | From CA | Registered: Dec 2011
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
So sorry you are going through this, Chastain. I hope all of these suggestions are helpful to you. I remember reading many postings on this forum about parasites being a possible cause of weight loss. I did not read anything about whether you have considered that as a possibility.
A naturopathic doc might be able to help you with this if you have had a complete workup with your traditional doc and lyme doc. I know there are many links to this if you do a search on parasites and weight loss. Gael is the guru on this
Thinking of you and hoping things will turn around for you.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Thanks everyone so much for the additional comments and support. I am still at a loss as to how exactly to proceed, but I do know that weight restoration is of paramount importance, as is treating my infections in the least excruciating way possible. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Kudzuslipper
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Member # 31915
posted
what happens when you eat Jess? do you hold it down? is there anything you can handle. I know someone mentioned AMY's gluten free mac and cheese. what about plain white rice?
Does anything you take have anorexia as a side effect? if it does perhaps you need to switch, or perhaps you need a drug break to let your body breath.
I think I have mentioned this before... but there is a antihistimine called periactin. even though I have the opposite weight problem, it is the only drug to help me with my itching when I have rashes. it is also used for anorexics to stimulate appetite and overall sense of well being. it may just help you get over this hump.
Posts: 1728 | From USA | Registered: May 2011
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lyme in Putnam
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posted
I don't know how do-able, but my mom would put in raw eggs in malted in the blender cause I was so thin. It worked back then, I havent tried it since. God bless.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
Kudzu, I will look into the antihistamine you mentiioned, thank you. When I eat I start to get severe nausea and the food rises up into my throat. I also get significant abdominal pain and lower intestinal distress...I can hold down about half of anything I put in at this point, sometimes more if I am lucky. It is hell on earth. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
The only docs that could sort out when I lost a third of my weight awhile back was a Naturopathic Doctor and an Environmental Illness Doctor.
I was suffering from so much malnutrition it effected me cognitively. I really needed an outside perspective to sort it out.
If self-treating isn't working, please consider seeing a new practitioner for a second, third, or whatever next opinion you're on.
A Naturopathic Doctor was the only doc that really helped me put the weight back on.
By the way, GI docs miss stuff all the time and just lump people in the category of IBS when it's really an infection (parasitic/bacterial etc..) that's treatable.
Posts: 2839 | From California | Registered: Jul 2012
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I am so sorry you are going through this. I would also recommend a ND to go along with your conventional treatment. I see one as well as my DD.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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MannaMe
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posted
Have you tried rifing for the babesia? My husband said he felt better almost right away when he started rifing for babesia.
Posts: 2248 | From USA | Registered: Aug 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
My doc got rid of babesiosis for me using Bactrim DS. Then, he eventually pulsed artemesinin in with it. (Zith gave me hives, so no mepron/zith for me.)
It took nearly a year, but it worked.
Posts: 9931 | From Maryland | Registered: Dec 2007
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
I agree with everything Boxer Mom said! But I wanted to add one more thing - it sounds to me like it is time to stop resisting and just get the G-tube. In addition to helping you put on weight, I think it will really help to reduce your stress level, because you are understandably and correctly stressed about your weight loss.
It just seems like your weight loss is approaching a medical emergency as you can't keep anything down, and there is no way you can get well without nutrition. I too am worried for you.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
I would definetely add an anti-histamine and try it. My LLMD said us with lyme also have histamine reactions or something. Benadryl and phenergan are also two other anti-histamines.
Posts: 697 | From CA | Registered: Dec 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
If you go with IV abx, then why not go with TPN as well? You need the nutrition support of the TPN, and I doubt a feeding tube would be sufficient with how badly your gut symptoms are...
I did the TPN and the IV abx at the same time, too - so I know it is possible. Just don't let them do Ceftriaxone and TPN (dangerous combination).
But there are lots of other IV abx that can be done with TPN. I did doxy, cipro, ceftazidime, and a couple others I don't remember...and there's Vancomycin and Erythromycin also.
But be careful with the -mycin's as they can pack a wallup (I'm "allergic" - probably a severe histamine reaction plus die off, but classified as allergy on my medical records).
I was on TPN for 3 1/2 years, never had a line infection. So don't let anyone scare you off from this life-saving technology.
Please talk to your doctors about TPN. You need it.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Razzle, I am just so scared to go with the TPN...I just have a mental block with it that I cannot put into words. I worry that if I go down that path, then I am stuck irrevocably with sickness. I feel like that is a point of no return or something. Perhaps I am being silly, but it is the one thing that I fear most right now. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Boxer Mom gave you such good advice, I can't add much. There are a lot of drugs that treat malaria. Coartem was very helpful for me treating babesia duncani.
As sick as you are, herbs will not do the trick. I think your doctor is right to give IV drugs.
I read online there is a new drug that is a rectal suppository of artesunate. I tried all the derivatives of artemesia and none of them helped except the artemether in Coartem.
Have the doctor check your ferritin levels. If you have a genetic mutation causing you to overload iron, it is feeding the babesia making it more virulent. You can help reduce iron with lactoferrin and IP-6.
You can incorporate naturopathic with the drugs but it would make more sense to get blood tests and genetic testing first so you are not making matters worse. Methyl cycle tests are very helpful. I don't like most naturopathic and homeopathic doctors because they use one size fits all remedies.
Your weight loss and inability to hold food down is very alarming. Boxer is right about how babesia messes with your mind so you need someone else in the driver's seat right now.
-------------------- 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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posted
Nefferdun, I have low ferritin actually, too low. I have heavy menstruation and it has led to anemia...I find it amazing that I continue to menstruate at all being so thin, but I do. I agree about the IV drugs possibly being the best route though. I think my dr is spot on with that.
Yes the weight loss and difficulty in eating is terribly alarming. I don't think I need someone else in the driver's seat though...I don't think I am irrational or incompetent to make decisions about my health. I so appreciate the help and the med suggestion as well. I will ask my llmd about it. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Jess, I agree with Boxermom and others here. I also think you need to see the world renowned lyme doc, ASAP. Call to see if you can be put on their cancellation list as you are deteriorating rapidly (tell them how much you weigh over the phone and that you cannot eat). Get in there as fast as you can.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Catgirl, I am scheduled to see the world renowned llmd in late november...I doubt if I can get in sooner than that, considering the fact that a fellow llmd who is now retired and a friend of mine pulled some serious strings to get me in. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Chastain,
Banging your head against the same wall is getting you nowhere.
TPN is not a sign of failure or an indication of being stuck. It is a tool to help get your body to a place that is better, healthier, and able to tolerate killing the bugs causing your problems.
If you are not getting nutrition (indeed you aren't), your body cannot survive much longer without permanent damage (heart, etc.).
TPN does not cause permanent damage, it can prevent it.
I was on the TPN for 3 1/2 years and now I'm off and doing ok without it.
I know it is scary, but it isn't as bad in reality as our minds can make it seem.
And the TPN may help to stop the nausea/vomiting cycle you are stuck in right now and actually enable you to tolerate food eaten orally better.
And yes, you can eat while on TPN, too - I was always encouraged to do so.
Please discuss TPN with your doctors - that's all I ask.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Lyme-o,
I tried to PM you but your mailbox is full...
quote:Originally posted by lyme-o: Razzle, what is TPN?
TPN is Total Parenteral Nutrition, basically food given through a vein (through a PICC line or Central Line).
In people who have severe digestive system disruption, either due to severe malabsorption or dysmotility (Chastain has severe dysmotility), sometimes feeding them intravenously may sometimes be necessary.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Razzle-you are probably correct...I just hate the idea of it...it just scares me so much...When you were on the TPN, did you still eat and drink or were you nil by mouth? Also, were you able to engage in all normal activities...I worry about intimacy as well, as that is an important part of my life and helps me feel better.
I am worried about the permanent damage as well...I am really scared of a heart attack from the malnutrition..that is my biggest concern right now. I just wish I could be normal and eat like everyone else and keep it down...even most people with lyme aren't THIS sick...its just so unfair and so damn frustrating. ugh....Thank you for being so helpful and concerned. I think you are right-this is an untenable situation. I do need to act quickly. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I was encouraged to eat as I was able to. For the first year, I could not swallow, so was unable to eat. But gradually the swallowing problem decreased enough to enable me to start eating again.
The only restrictions I was given were no repetitive motion of the arm with the PICC, and no lifting of anything over 5 lbs. with the arm with the PICC line.
A PICC line or Central Line will not stop you from being able to be intimate with your partner...you just may be a little sore in the arm (PICC) or chest (Central Line) if you do this too soon after the line is put in. Nothing a heat pack on the site wouldn't be able to remedy, though...
Another thing the TPN has helped me with is taking off the pressure of needing to eat all the time. The nausea made me not ever want to eat, even after I could swallow again.
But without the pressure that I had to eat to survive, I could relax better, and just eat when I wanted to instead. So the TPN actually helped to relieve the anxiety about eating that was caused by the nausea.
You may not need the TPN for very long (the first time I was on it for the Gastroparesis was only a little over 3 weeks), just long enough to get your body to a better place so you can start to feel better.
While you and I have the severe gut troubles from this darn disease, others have seizures, or paralysis or joint destruction or something else equally disabling.
I know, it seems like we're worse off than others, but really, most all of use with severe chronic Lyme/coinfections are all in the same boat of wrestling with something severely disabling...be it joints, gut, neurological stuff or whatever.
Sending gentle hugs,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Razzle-THANK U so much for yr posts and advice and encouragement...Yes the nausea makes me never want to eat either...oh, I agree all of us with this illness complex are in the same boat in so many ways and I incidentally have tons of neuro issues as well...I suppose I just miss the basic ability to eat something and keep it down. It makes me feel like I am not fully human or something...
I am glad to know about the intimacy, thats a great relief to me. Thank you again so very much for helping to ease my fears. You have been invaluably helpful. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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