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!
Posted by Beverly (Member # 1271) on :
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.
Posted by GiGi (Member # 259) on :
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.
Posted by dmc (Member # 5102) on :
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.
Posted by quaicheng (Member # 8392) on :
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
Posted by Mathias (Member # 5298) on :
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.
Posted by Semi-Retired (Member # 7722) on :
Mathias,
Can you say which co-infection you had and how it was determined (test, lab) you had it? I think I'm in the same position. Thanks,
Tim
Posted by Health (Member # 6034) on :
Are you on Flagyl?
I heard you need to do this while on IV Rocephin, or that you get better results.
Maybe the Rocpehin is not the right antibiotic for you? Maybe some other oral or IV.
That is too bad, all this suffering and nothing for you. I hope things improve for you.
I know about leaving this planet, I have felt like that many many times.
Trish
Posted by groovy2 (Member # 6304) on :
Hi earth
How long have you been sick?
have you taken other meds? How long?
Has doctor talked about co infections? Have you been DX with any?
Are spasms only in your leg? Explain more--
When you go to doc -- Make sure to write down info to give to doc to look at if nessiary-- Make sure it is Easy to read and makes sence--Short--
Give them a copy to keep- Be well prepaired--Jay--
Posted by Mlaven323 (Member # 8179) on :
Hi.
Are you far from your doctor?
Even if you are, it seems to me that you should be able to speak with him on the phone about this!
I know that Magnesium and B viamins are highly recommended supplements to take with LD.
Hope you get relief soon!
Posted by earthsong15 (Member # 7471) on :
[QUOTE]Originally posted by groovy2: [QB] Hi earth
How long have you been sick? I have been dealing with this for 10 years.
have you taken other meds? minocycline for 2 months and doxycycline for 4 months.
Has doctor talked about co infections? no, I tested negative but realize that might not be accurate.
Are spasms only in your leg? Yes- both legs. Very intense!
Thanks for all your good thoughts- I really want this to work!
Posted by Pantsinsocks (Member # 7440) on :
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.
Posted by groovy2 (Member # 6304) on :
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--
Posted by bpeck (Member # 3235) on :
I agree with groovy. You would probably greatly benefir from Magnesium and B vitamins. Barb
Posted by earthsong15 (Member # 7471) on :
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!
Posted by earthsong15 (Member # 7471) on :
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!
Posted by earthsong15 (Member # 7471) on :
up
Posted by brentb (Member # 6899) on :
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.
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