posted
Hi everyone, maybe somebody knows the answer???
I was bitten by something in september 2006, had a rash and went to the hospital because it just kept getting bigger. about 5" x 8" when it was done.next day went to my dotor to get rechecked.no one ever said Lyme.
never felt right after that but working in construction just thought aches and pains were normal. off balance and flushed figured i needed more rest and maybe too much wine the night before.
i had what i thought was a sinus infection that wouldn't go away. 3 times took antibiotics they just made me feel like crap. so that was 2007.
january 2008 driving to work one morning got really flushed, left arm was all tinglely, pain in my chest but in the middle not left side. thought ok stroke??? panic attack??? after 2 or 3 minutes it resolved.
later that day a little facial palsy developed and 2 days later noticed left foot dragging.
2008 to 2010 went to all kinds of neuros. diagnoised with MS, transverse Myelitis, Progressive relapsing remitting MS. all lyme tests kept comming back neg.
ok 2011 feburary go to john's hopkins. they think "you have a weird form of MS, try Rebif" my neuro says ok....3 weeks later now in a wheelchair and can't leave the house. at least before the rebif i could walk with a cane and drive short distances.
ok ..finally went to LLMD in june 2011 after my sister in-law told me about "under our skin" she says you have to watch this movie, the one girl in it is just like you. she was refering to mandy hughes.
so after 4 mos on orals my doc wanted a picc line put in....did it ..now on iv ceftriaxone 2g iv push daily, 250 mg amoxicillin 1x daily and flagyl 3x daily. added samento by nutramedix 1x daily 3weeks ago, NT factor by nutritional therapeutics 2x daily 1 week ago as well as 200mg co-q10 and 300mg alpha lipoic acid 2x daily.
also last 2 weeks taking 1 whey GNC protien shake daily and 1 packet of electrlytes.
in addition to daily vitamins for years. GNC woman's ultra mega, b vitamin complex, magnsium 400mg, glucosamine & chondroitin with MSM, evening primrose oil 1300mg.
i know a little long winded but here is the question....... am i taking too much? not enough? does anyone have the same severity of neurological involvement? what did they do to get better??
after all this treatment i still need a walker in the house and can't get out of my house without help and outside still need wheelchair.
however it is about 15% better now than at the start of treatment.
any ideas????
-------------------- michellen Posts: 10 | From stony point, ny | Registered: Jun 2011
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Up for input.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
SORRY TO SEE THAT ALL THIS IS HAPPENING...AMAZING HOW THIS WHOLE ILLNESS AND FRIENDS WRECK HAVIC AND WORSE IN PEOPLE'S LIVES...
I take it ,you're seeing an LLMD.... Was ebif something with steroids in it???
Never,never....steroids
I hope others here will log on.....
I'm into treatment 4-5 months and have very little ,but some, progress.......I'll take what I can and then some.
Hope that mepron kicks in soon ,along with everything else am taking,,,,,
Take care..
I'm tired of these 4 purple walls... Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
There are many people with lyme disease that have the symptoms you describe. Lyme disease is basically a disease of the nervous system. It can become totally debilitating. Those who are bedbound, house bound, and in a wheelchair need to go on IV medications.
So, what your lyme doctor is doing for you sounds good. First, he tried a few months of oral medication, but it wasn't enough to really help you, so now he has put you on IV medication.
It takes time to see any improvement.
The ceftriaxone, amoxi, and flagyl are all good lyme disease medications. Good lyme doctors know that the patient has to be on at least 2 lyme medications simultaneously to effectively kill lyme. If you are just on one lyme med, the lyme will change into a form that that medication cannot kill. If you are on meds that kill all the various forms of lyme (like ceftriaxone, amoxi and flagyl), then the lyme is unable to avoid being killed by the meds.
Lyme patients also need to take a lot of supplements as these diseases deplete our bodies of many things.
To get your education on what good lyme treatment looks like, I suggest you read and study the Burrascano Lyme Treatment Guidelines found here:
To see the proper dosage of each medication, see page 18 and following. To see the list of supplements that lyme patients need, see page 27 and following.
Burrascano was the most successful lyme doctor in his day. People came from all over the world to see him.
Notice his discussion of ceftriaxone on page 16. He recommends taking 2 grams twice per day for 4 days in a row each week.
It may be that your doctor does not have you on this dose because you are also on amoxicillin. However, you may want to discuss this with your doctor at your next appointment.
The discussion of why you need to be on more than one lyme medication at a time starts on page 12. At the top of page 13 he explains that flagyl (metronidazole) is one of the few meds that can kill lyme when it is in the cyst form. So, it is very good that your doc has you on that. Page 18 (near bottom of page) says the flagyl dose should be 500 mg to 1500 mg per day.
Please read the cautions about taking flagyl on page 15. You must be on a strict low carb diet while taking flagyl (and all other lyme meds) or you will get a yeast infection in your mouth and intestines. (White tongue is the classic sign of this--called thrush in a baby.) AND, no alcohol, etc. as it says.
The discussion of the anti-yeast diet begins on page 34.
If you read and STUDY this document, you will be able to evaluate your lyme treatment and you will understand what the doctor is doing. You will also get a much better understanding of why your doctor is doing what he is doing.
You will also read that you can expect to feel worse as these meds kill a lot of germs in your body. This is the herxheimer reaction. Drink lots of water and squeeze a lot of fresh lemons into the water to help you lessen the herxheimer reaction.
Hopefully in a number of months, you will be walking again on your own.
Here is a quote for you from page 4 of the Guidelines:
"It is clear that in the great majority of patients, chronic Lyme is a disease affecting predominantly the nervous system."
Many people were misdiagnosed with MS when they really had lyme disease. It looks like Rebif is interferon. Be glad that you were not given any type of steroids by your previous doctors (I hope you weren't). A person with lyme will be made much worse by any form of steroid since steroids shut down your immune system which is needed to fight off these diseases.
Posts: 9931 | From Maryland | Registered: Dec 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
When I was on ceftriaxone my doctor started me off on 2g daily. I took that dose for many months. It worked well for my work schedule and life at that time.
There may be a good reason he chose to prescribe it that way. You can ask your doc. It can be given continuously like you are doing or pulsed like TF mentioned 4 days on and 3 days off.
It also doesn't sound like you are on too many supplements. Many of us take supplements to help support the body and help us heal.
Read the guidelines as TF shared with you, they will help you better understand why you need to take all that you have been prescribed.
One thing I noticed you did not mention is probiotics. You need to be taking some good probiotics like VSL#3, Theralac, and S. Boulardii. Probiotics will help prevent antibiotic associated diarrhea and c.diff. These are very important.
Take care Posts: 5237 | From here | Registered: Nov 2007
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