posted
Hi All- I am now into my 13th week on IV Rocephin and instead of seeing even a glimpse of improvement, I am having all of my symptoms still getting more intense. Most annoying (to the point of making me crazy & even wanting to leave this planet at times) is the intense spams in my legs. I have had the spasms for the past 10 years and they have driven me nuts, but now there is no reprieve! My left leg has been spasming every 15 seconds for the past 2 days without a break.
These spasms are very violent and the muscles ache after awhile. Is this normal to just keep going downhill after all this time with not even a tiny bit of improvement? I'm heading to California next week to see my LLMD but need some encouragement from all you kind folks.
Thanks!
Posts: 85 | From Eugene | Registered: Jun 2005
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi earthsong,
I have had intense spams in my legs also...don't know if it was lyme or my low thyroid at the time or maybe both? They would wake me up in the middle of the night, getting my thyroid levels up did help.
You could possibly be herxing and depleting your body of Magnesium? If you don't feel any better, I would call your LLMD. I hope you feel better soon, so sorry you are in pain.
GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Do you think your body is telling you something? Many people become allergic to IV Rocephin after a short period of time. This can't possibly anything that will help you heal. I would listen to my body's response.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
my legs spasms and actually "lock" at times. Less now but I take herbal restless leg meds with quinine that works. If I don't have them tonic water with quinine works too for me. (acquire the taste of the tonic water...bitter).
Magnesium works if you are deficient and the amino acid GABA works too. The GABA gives a temporary odd feeling in chest. But it quiets the nerves system. I used GABA when I had the leg jerks. I mix my GABA powder in water.
Good luck.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
Agree with GIGI. The Rocephin probably has done it's job. Your body is probably reacting to the debris buildup it left behind. Drink 1 gallon of water with vitmamin C powder adaded, every day.
quai
-------------------- "In spite of the ever increasing cost of living, it remains quite popular" S. Shackel Posts: 87 | From walla walla wa | Registered: Dec 2005
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Could be an undiagnosed co-infection. I did 24 weeks of Rocephin without improvement b/c of an co-infection. Once the co-infection was found and properly treated, 90% better to date. Talk to your LLMD about additional testing or different protocols to treat co-infectons.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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posted
Have you had your iron checked...especially what they call the "storage iron" - I forget the real proper term for it.
The reason I ask is because my wife has very similar symptoms, and after years of searching, we found that it seems to be related to her iron. Her leg can spasm so hard I cant lay in bed with her.
Gets worse at certain time during cycle. Improves when she takes good iron supplement consistently for several weeks. Good luck.
Posts: 67 | From Fredericksburg, VA USA | Registered: Jun 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi earth
I agree Look into Magnesium and B viamins- they have helped many here--
Babs made me gerk all over- after I started treatment the gerks have settled down--
Do you have night sweats? Short of breath? Headaches? Joint pain?
List every symptom when -how bad- how long-
Meds how much- when - how long- were meds taken steadily ect. Have you had any improvemnt--
Earth there is alot of knowlageable people on this site who want to help you--you have to help us to help you by giving a clearer view of whats going on--
Look at dr Bs list of symptoms on newbee pages-- How many of these do you have?
Have you done anything to detox- Have you taken any electrolites--
List everything you can think of- --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
I agree with groovy. You would probably greatly benefir from Magnesium and B vitamins. Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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posted
Hi all- thank you all so much for your concern and responses.
In a nutshell- I have been on doxycycline for 2 months, then doxycycline for 4 months, then 1 month of xifaxan to see if we could reduce my bloated belly,
then 13 weeks so far of just IV rocephin with 1 week of ketek added but my liver enzymes elevated so I stopped.
I am seeing my LLMD down in California this week. It is an 8 hour drive!
My symptoms before starting the treatments have been mostly neurological. 10 years ago my legs went numb and have steadily gotten worse to the point of I am no longer ambulatory.
My legs do not move and my fingers and hands have a very hard time. I am a fighter so I still work full time andf still keep a smile on my face. I was told that I had MS but have always known that a pathogenic organism caused this.
I tested positive for lyme this year and negative for coinfections.
My symptoms now while on the meds are: night sweats occasionally, still bloated belly, migrating joint pain especially in wrists, and elbows, stiff neck and back all the time, general achiness. & my liver enzymes are still elevated!
I have not really herxed at all and none of my neurological symptoms have lessened.
I'm hoping the doc has some guidance and suggestions as well as you kind folks.
Thank you!
Posts: 85 | From Eugene | Registered: Jun 2005
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posted
Oh yeah- I have done tons of magnesium and B vitamins ( IM B complex, folic acid and B 12) for the past 10 years. I eat only organic vegetables and meats and take many herbs to help with symptoms.I am an herbalist by trade and am knowledgeable bout supplements.
Thanks again!
Posts: 85 | From Eugene | Registered: Jun 2005
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posted
From my case and listening to others there's a decent chance that traditional abx will not only NOT cure you but also make you sicker. Plenty of folks are using alternatives with good results. Check the Willy B post, silver has been a godsend for me.
Posts: 731 | From Humble,TX | Registered: Feb 2005
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