posted
Sorry about the long post, I feel like I'm bothering everyone posting constantly but I have some life-altering symptoms (ha -as if this illness wasn't life-altering enough) that I really could use support with.
I have developed SEVERE pain in ALL my joints..neck, shoulders, spine, lower back, knees, feet, on and on.. and frankly I am getting scared and very despondent. I am under the care of an LLMD.
I completed about 8 mths of IV Rocephin in June and did fairly well (for me)..while on the IV (maybe April) I began to develop 'strange' sx such as foot pain (gotten so bad that I can't walk), headache, chills, sweats, etc. My doc felt we needed to treat babesia and last yr I had some really good results so was hoping I might feel better and actually be able to get out.
Well.. the sx have progressed to the point I literally want someone to shoot me (kidding). I literally can't lift more than a glass of water or I get severe back/joint pain. I have tingling and pain in both my arms too and hands hurt to even type. My feet burn and kill me. I wake up thirsty every morning and go to bed hoping I will wake up better.
The Mepron tx is doing nothing for me. My LLMD says "detox" and while they might be right on one level..I have gone from feeling positive about the future to absolutely agony 24/7. Yesterday I cried my eyes out all day long and I have a feeling today won't be any different. This is getting so old. I can barely move. Stretching does nothing but make it worse, walking makesmy back/neck/spine hurt even more. Trying to detox better but I have a feeling that isn't it.
It can't be Lyme since I've treated it. Babesia tx doesn't seem to be helping at all! I feel like the Tin Man or even worse. Depression and utter despondency is setting in.
Please help if you can.. and thanks for reading.
Posts: 394 | From Southeast | Registered: Oct 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Sounds like its gone neuro
It is not true"it cant be lyme cuz ive treatedit"...sorry
It is never really gone....if your llmd says that you need a new one
Did you treat bart? Bart often makes foot priblems
With bii films and cyst forms etc...tx is very complicsted and long
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Really? I thought 8 mths of IV's were more than enough. No, my doc didn't say it was 'gone', just that we needed to treat Babesia.
Never treated Bart..I asked him that and the answer was "detox" and "continue with Babeisa tx" as well as many tests I have yet to do (like gluten sensitivity, mold, etc.).
Thank you Ipkayak.. yes, long and complicated it is. Sigh.
Posts: 394 | From Southeast | Registered: Oct 2012
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
If you are having joint and body pain, one of the easiest things you can do right now is go 100% gluten free.
I have had older men grocery store check out clerks see me buy GF, then tell me they finally decided to try it (has to be 100%) and they can't believe how better body pain is-
don't wait for GF sensitivity testing, just try it.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
And if you didn't treat cyst, just straight IV for Lyme while chronic, spirochetes can come back out.
And foot pain and headaches sounds like Bart. Sorry. But try radical diet change, could be helpful while tx.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Thx surprise.. that was one of my LLMD's suggestions. How do you do that when you can't even cook? There is a Whole Foods, Fresh Market, Trader Joe's, etc. nearby, maybe I should ask if they deliver? I used to have a worker who cooked but I've moved and need to find someone.
Oh thx for the 'push' - I will look into this seriously now.. any websites that are particularly helpful for beginners? y'all are wonderful.
Posts: 394 | From Southeast | Registered: Oct 2012
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posted
Oh just saw your second post surprise.. I was on Zith and Tindamax (pulsing) while on IV's. What about parasites? I'm sure the iV's did a number on my immune system.
Posts: 394 | From Southeast | Registered: Oct 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I didnt know you did tini-thats good and important
Parasites are important too-but many here see a difference with gluten free
I see a huge difference with no sugar
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
its not lyme,,,,, mold mold mold mold mold mold mold
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Tailfeather-I am so sorry you are suffering so! Especially with this heat, in the summer, to have that kind of overall joint pain etc must be super tough.
I compared myself to a wounded animal also, when the encephalitis was bad, and prayed daily to be shot or hit by a bus...glad neither happened because eventually the encephalitis went away. So please keep your spirits up and try to think of the time you will have when this pain finally goes away. Don't give up.
I did 8 months of IV roceph with a boatload of other oral abx also.
My lyme symptoms have improved dramatically. But LP is correct...is it ever really gone?
Surprise made great point also. Going gluten and dairy free will make a difference even if you tested negative for gluten sensitivity. I had numerous tests, gluten and wehat are supposed to b A-OK for me, but they aren't. 24 hours after eating gluten my joints get sore.
Most of us totally relate to being in so much pain as to not be able to prepare or shop for healthy foods. Is there anyone who can help you with this? Even a neighbour? Is it possible to get groceries delivered to your door?
There is some conflicting information about l-glutathione and babesia. Some say it makes it worse, other docs (Dr. B says it helps in some cases)
During heavy treatment, I did IV glutathione 2 days a week and it helped. Is this something your doc is able to do? Just to see if it is something that helps you? If it is helpful to your body, you will probably feel it within 6 hours.
Also, there is a liposomal glutathione (oral), that both my pain Doc and my LL told me to take. Readisorb. It is expensive. It helps Phase 2 detox pathways. Not as quick as the IV glut.
(Note: Those with sulfur allergies should avoid l-glutathione)
Anyways, hang in there. I hope you are blasting the $#it out of babesia and this is why you are in such overall pain.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Mepron is notorious for causing depression. There is an old thread called "Mepron blues" which is quite long, with many folks talking about it.
So, I suggest you try stopping the Mepron for a day or 2 to get rid of that horrendous side effect.
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
my current lyme dr tells me....
think of your skin having been burned in a fire.
you can stop the fire and treat the burn, but the skin and what other damage - nerve, muscle, - are going to need time to heal after the fire was put out.
it makes sense to me. the only trouble I have with all this lyme stuff is that NO ONE seems to know everything and each of us is so completely different of a case that it is impossible for anyone to say "you are cured"
I used to think cure meant all symptoms GONE, but my current thought on cure is living the best way possible with this and having the least amount of lingering effects.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
My pain is awful too - doc wants to start me on PICC line next month - scared to do it
Posts: 21 | From Maryland | Registered: Mar 2014
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posted
Have you had your vitamin D levels checked. Mine were so low (either from Lyme or Mold) and my joint / neck pain was awful. I started taking Vitamin D and the joint pain was gone in a couple of days
-------------------- Diagnosed with Lyme 4/7/14
KB Posts: 87 | From Townsend, MA | Registered: May 2014
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posted
There was a point in my treatment when I was extremely depressed and despondent, and feeling very dark. It scared me big time! I contacted my doc, and she had me back off on my treatment for a relatively short time.
Then, when I restarted treatment it was done more moderately, with a lower dose of meds, and I felt more sane.
It may also apply to the pain you are experiencing, too much, need to back off.
I don't know if others would agree, or if this would apply to you, just offering it as a suggestion to consider.
Best wishes.
Posts: 873 | From WA | Registered: Dec 2005
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