After some advice on this site (thank you) I asked my doc to test for co-infections. He told me I should stay away from the internet but I explained that my liver results from MRI and CT led me to question this threw advice on this site. I have to be honest I scared to death. I have read some things on the net and all talk about immune compromised patients having the pooling blood/tumors on liver and I dont have a compromised immune system. So whats going on ?
Also he put "no evidence of on going illness - will explain during our next visit or at end of rocephin" which really bothers me. I'm STILL losing a ton of weight, I have to go and have my liver count done tomorrow because my count went up to 116 on Rocephin and I dont know if I'll be able to continue the Rocephin. I'm so fet up with it all. I'm mad I had to ask him to do the test, upset about his response when I brought it up, more upset that he didnt call me with the results.., I got them in the mail on a short note and I dont know what evidence he needs to prove that the illness is on going, but if me losing 30 lbs and all the other tons of symptoms I have including a MRI with and enlarged aorta and massive 6cm tumors on my liver isnt enough then what evidence would he need exactly. Why is my blood showing this "inactivity" . I'm so confussed about all of this.
Please help. Any links to sites that have info concerning your liver and the co-infections etc. would be a huge help. I just cant search the web anymore. Its like a constant dead end search. I'm ready to admit myself in a Boston hospital and I'm going to refuse to leave until they figure out everything. I want to know everything that I have and everything it has caused RIGHT NOW. Please...feed back from those of you that know. I need it.
[ 12-13-2010, 08:39 AM: Message edited by: coley77 ]
Posted by momlyme (Member # 27775) on :
IMO, any doctor that tells you to stay away from the Internet is just trying to suppress the truth.
Sounds like this guy is either a GP or an ID. Run, don't walk away and find a qualified ILADS doctor.
You are sick. It sounds like you are very sick.
When was this appointment? I hope you didn't find that doctor on this site?
You are on IV Rocephin?
My son's liver function tests have been rising since he started IV rocephin (really ceftrioxone)... not too bad though.
Are you taking milk thistle, coQ10 or Omega oils? Try to stick with Krill oils or one that guarantees no mercury...
Detox! Lemon water. Cold pressed oils, coconut oils, olive leaf extract, detox baths - do a search on this forum for detox (subject only) you will get a ton of information.
Someone else will be along with more help.
Knowledge is power. My first doctor (PCP) said to stay away from the Internet unless it was nih or cdc website... sounds like propaganda to me. Only the government has the "true" info... It's actually the other way around. The government spews lies about lyme and the coinfections that come with it.
Posted by coley77 (Member # 28924) on :
I finished my first cycle of Rocephin at 1gm, was going to go up to 2gms and was told to stop all together last Tuesday because of my liver count. I hope I can finish what I started but thats something I wont know till Tuesday or Wednesday.
He is a GP, one who claimed to have a lot of knowledge of Lyme when he diagnosed me. I know now that I need to find a specialist and am aware of one in Falmouth that I will be calling and faxing all of my info to tomorrow. I pray to God he will take my case. I didnt find my GP on this site, but I had a lot of faith in him up until now. I printed info off of the internet to take to him tomorrow when I ask for copies of all my blood work etc up till now to fax to an ILADS. I'm really shook up about this . Thank you for your quick response.
Posted by momlyme (Member # 27775) on :
Are you taking supplements for liver support?
Some people get prescribed actigall while on Rocephin to support the liver.
Notes I have from my research on liver support:
Milk Thistle (required)
ox bile supplements
lactoferrin
coffee enemas
Intestinal cleanse with activated charcoal (about 15 minutes before enema to help take toxins out of body)
Eggs because of the choline content
Beets and artichokes are great for the liver.
Steam some beets with sweet potato or red potato and onions. Add coconut oil or butter to them after you pull them from the pan. Add herbs a little sea salt and not only are you helping your liver nutritionally you are creating one tasty treat.
artichoke drops (raintree)
jarrow makes a great bile salts supplement
Beets increase bile flow and thin the bile.
Lecithin, choline, tumeric, cucurmin, yarrow, Oregon grape root, taurine, milk thistle, artichoke and dandelion have similar effects.
eclipta alba
barberry
fumitory
chelidonium
drink green tea, detox tea, herbal teas, water, leomon water
Enzymatic Therapy's Super Milk Thistle, with dandelion, licorice, and artichoke.
HepaPro
Liv-52
Posted by lou (Member # 81) on :
Sounds like you have gotten all the help you will get from this doc and time to move on.
Losing weight is sometimes a sign of babesia. It was for me. "Tumors" on your liver could be bartonella. Has anyone given you any other explanation for this?
Be sure that the lyme doc you choose is one that takes coinfections seriously. You said you were positive for bartonella. Were you treated for it? And ehrlichiosis--were you treated for it. I don't think rocephin touches E, usually doxy is used.
Posted by Lymetoo (Member # 743) on :
Yes, research on the LLMD is a good idea too... not all are created equal.
Glad you are moving on!
Posted by nefferdun (Member # 20157) on :
Post on "seeking a doctor" to get recommendations for LLMDs in your area. Even then, try corresponding with a few people individually before you make your decision.
I happens all the time. Doctors do not know what they are doing. And they also don't care. I hope you can find someone that will treat you appropriately.