posted
Just curious if anyone has suffered from loss of taste (nothing tasts good) which has affected your appetite? What stage of lyme were you in at the time? Was it the meds. you were on? She is defintely in late-stage neuro lyme.
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Absolutely yes.
It was not that flavors were negative, but that they did not register in the brain with any valence or meaning.
That was coupled with the inability to "feel" hunger, and so could not have cared whether I ate or not.
Intellectually, I knew I had to put something in the body. It was just another medicine.
That went on for about 6 months until I found a certain brand of frozen broth, which I used to make a lunch. I would put leftover rice, a vegetable (bok choy was the best for me for some reason), one frozen canned tomato, parsley, and cubes of meat. All these were in the freezer in serving portions.
With that, my brain and body registered "good".
Unfortunately, they stopped manufacturing it, so tried various other broths which were terrible. So I made my own, using the ingredients on the frozen broth label. Dont forget the white wine! Or red wine if beef broth (use oxtails and other bone/meet cuts for beef broth). Alcohol will cook off.
(water, whole chicken, carrots, celery, parsley, shallots, loads of garlic, and white wine. Remove meat from chicken about 30-45 minutes, return carcass). Cook for a few hours, strain and dispose of overcooked veg., and freeze broth in serving portions) I removed skin at first, but then kept it in which intensified "good" flavor.
Use new veggies, including parsley when serving.
That was the only thing that I had a response to, for another 9 months.
However, something kicked in, and I now can taste and enjoy the flavor of food.
Yes, I think it is a neuro problem, but that is an interesting idea about the meds also contributing. I was pulsing by the time I found the broth. I dont know how you could tease out time, progress, meds, appetite, etc. They all occurred progressively.
However, I am now on a mild pulse, but food still tastes good when on it. This is almost 2 years after starting treatment.
Also, at one point I used naturopathic for 6 months, with no abx, and there was no improvement/change in the appetite. Brain draining through Vodder massage, and lymph work with a chiro/nd was the only new thing added, prior to the improvement.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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I could eat a T-bone steak or a box of frozen brussel sprouts, it did not make a difference.
not only could i barely tell the difference in taste... I had ZERO appetite, and it went back and forth between forcing myself to eat, and just caring less either way.
On the wild side, since my entire nervouse system was effected, i did not know if i was full or hungry... really really odd.
I could eat 11 tacos, or 1 taco, and i still felt the same.
Yes, I was in late stage neuro lyme... and not on any meds yet.
I am mostly better, have little appetite, and much stronger feelings of fullness, and my taste is now back about 95%.
no more burning tongue, or heavy white coating.
Please, my best wishes for a full recovery, I know exactly what u r going through.
Posts: 48 | From Toms River New Jersey | Registered: Apr 2006
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Thanks,- just curious what kind of symptoms you had with your neuro-lyme? My niece is practically paralyzed and her tongue has been "shaky" for awhile. She has all the symptoms of true ALS. She tested negative for all ALS tests, though. She is an identical twin, and her twin sister does not have symptoms. She has been on Rocephin for 6 months and Levaquin for 2 months now and no improvements. We thought we'd see something by now...???
Definately a yes for both sxs. I could have cared less if I ate anything because not only did I not have any appetite but, I couldn't taste anything either.
I have not been officialy diagnosed but believe I have late stage Lyme and co-infections as well.
The sxs lasted for a few months and now they're gone and I can eat again and enjoy it.
tic
-------------------- Adversity is the diamond dust heaven polishes it's jewels with. � Robert Leighton
Daily world-wide prayers welcome for the Lyme Community - every day at 6:00 p.m. Pacific Time and 9:00 p.m. Eastern Time � all faiths welcome! Posts: 309 | From S.E. Mass | Registered: Apr 2006
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