posted
I am crying and feeling so discouraged, seems like I'm watching my life just pass on by while I wallow in illness. I so wanted to go to a track meet event with my 8 year old tonight, just cannot do it, feel too awful. Thank God for my supportive husband - he took him.
5 months of orals with little to no change. Is this to be expected? I don't think that I've herxed or seen improvement - neither; I'm just sick all of the time.
I begin to question diagnosis even though I had several + and/or IND Lyme bands along with + for bart, babs and ehrlichia. Seems like I should see something, even a glimpse of improvement by now.
I am on zithro, mepron/art, pulsing flagyl, armour thyroid, adrenal support, supplements, watching diet, trying to exercise when I can manage it (some days there's no way). I am 5'5" and down to 110 lbs., my "normal" weight is 120 - 123. I feel horrible.
My symptoms are almost all neurological, a mess really. My extra heart beats are almost constant. I had a normal echo/stress, but my EKG is loaded with PVC's/PAC's. Now they want to do a cardiac MRI just to be safe...looking for some obscure genetic problem. Seems like a waste of $/time - I know it's infection related (assuming diagnosis is correct).
Sorry to be such a downer. If I am told, "be patient," one more time I am going to fall apart. It just seems that at 5 months, I should see at least some change.
I don't consult with my LLMD until October 1, she is away on maternity, have the same Rx plan until then.
By the way...if anyone has time...does anybody know the difference between brain "lesions" and "hyperintensities" in the deep white matter? Just curious, I had the "hyperintensities," on my MRI about a year ago, prior to Lyme diagnosis. Thanks gang. TS
Posts: 566 | From West Coast | Registered: May 2008
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Alv
Unregistered
posted
PM you .
You are not chasing BART that is your worst enemy right now!!!!
Azithr alone ...is not even touching it if you have neuro issues.
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posted
I had a similar experience when I first started treatment. Detox is very important, I do simple things like activated charcoal, lemon water and herbs (neem, milk thistle). Hot epsom salt baths help too.
-------------------- Amy
Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Alv,
I am on Mepron/Zith too.....are you saying she should add a Bart medicine in with that? Just curious!
To the original poster-- I have been through a lot of what you're going through. I have made some progress but still have a long way to go. I wish I had more answers for you! I believe it's about finding the right combo of meds.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
My issues haven't budged much either and I was a strong healthy athlete prior to lyme. Hang in there!
I feel that I was probably infected a long time and as such it may take a long time to clear the infection, which has most likely disseminated to all body points...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Lymeorsomething...how long have you been treating...with what? Any co-infections?
Yes, I too was very active, lots of distance running, hiking etc. I get out and jog when I can...but often my balance is just too weird, my feet too numb or I just feel too plain awful.
Alv...I will have to ask about bart with my LLMD. October feels very far away.
Posts: 566 | From West Coast | Registered: May 2008
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi ticks
I am not fimiular with your situation- but from what you said in this post you have a lot of infections -
Babs and Bart are tuff germs - its is most likely going to take a while for you to see any results--
How long have you been sick ?? List the amounts of meds you are taking --
Let me tell you about myself-
I got bit 21 years ago- I saw the Bullseye on my leg but had no clue what it meant-
I went untreated for about 18 yrs- I have Lyme and Babs- 4 yrs ago I saw a TV program on lyme- I finally figured out what was wrong with me-
I got a appointment with a LLMD - my First appointment was canceled - It took One year and 2 weeks to finally see the doctor-
I was so sick i had to be carried into office- there was No way I could have exercised or even thought about it -
It took about One year of treatment to show any signs of improvement - and then it only lasted 5 minutes --
But from that day I Knew I would get well again -
Now 3 years into treatment I feel 95% better-
Treatment was No Fun -Painful -and took way to long to feel better-
you have to stay positive and go with the flow-
Trying to push things to happen is not a good thing to do -
Lymenet is Full of stories where people pushed to hard only to relaps and end up taking longer to finally get well--
Yep its ruff that you missed the game tonight- but your child will need a Mom that can help them in the future --
We all have been in your situation - it is Hard -and tuff to deal with-
But you have take the Long term view -
Its important for YOU to get well- Other things can wait till then--
I have gotten well and so have thousands of others- and not one of these people got well as Fast as they wanted to -
Look at it this way -You are Lucky - You know what is wrong with you-
There are tens of thousand of sick people out there that have No Idea what is wrong with them
and will life the rest of there lives in horriable pain - Locked up in the prison that is there sick bodies -
When you look at it that way - You are Perty Lucky --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Hey ticks,
I don't know what to tell you...this a maddening, frustrating, painful disease. Treatment and abatement of symptoms takes a long time, especially when there's neurological involvement. Stay the course and I hope you feel better soon.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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ByronSBell 2007
Unregistered
posted
If you have all of those infections, you "NEED" IV ABx immediatly with daily heparin.
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I don't see Levaquin, Bactrim or Rifampin in that combination. That is a problem in my opinion. Your symptoms, which clearly are Lyme Disease related, are also, clearly Bartonella or a Bartonella-like-organism.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Staying possitive and calm is the best thing wether its 5 months of treatment or five years.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
I agree with Alv and Metallic Blue: Bartonella
It's impossible to remain calm when you have Bart. It's an infection inducing anxiety biologically.
You need to treat it and WHILE you treat it, I highly recommend anti-anxiety meds to get you through. My Bart symptoms were most pshychological but there can be physical symptoms, too, depending on the strain.
I had (and still experience to a lesser degree): daily crying/sobbing sessions horrific anxiety racing heart mood swings rage impulsivity doom/depression/no hope for any joy ever again calf pain
posted
I have to agree with the other posters. Sounds a lot like bartonella. I started getting real results as soon as I started on Levaquin.
Best of luck. I'm not over my illness, but I can deal with it on a day to day basis. some days I feel "normal", other days not so normal. Anyway I've been on Levaquin for 4 months, 2 months to go. I'll start hitting the babesia next. I've been treating it simultaneously with malarone, but I can tell that it is still there. Shortness of breath, fatique, sweats (not necessarily at night, but whenever my body feels like it), and a bounding heart.
Hope you can get on some levaquin, and I hope it works for you, like it has for me.
Posts: 158 | From Santa Monica | Registered: May 2007
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posted
Wow...thank you everybody so much for your support and information; it's absolutely invaluable to me.
My LLMD actually doesn't leave officially until the end of the month and is good with email. I will try to read more here...am wondering if Levaquin is an option while on mepron/art, zith, flagyl. I will do some reading on this and email her.
I read through a Bartonella symptom list here. I have bad fatigue, but have the racing/raging nervous system with it - which is described with Bart.
If I can add another med to try to hit Bart better right now, I want to do that. Otherwise, I guess I wait until I'm done treating Babs.
I didn't mean to sound like a pity party on my first post, sorry. I am more fortunate than so many, I know. I am ambulatory, I can still get out some etc. I just feel so terrible all of the time, even though I "look okay." Feeling on the verge of passing out and all the rest with it is so exhausting. I know you guys can relate.
Thank you again for sharing your knowledge, opinions and responding - I just can't tell you how helpful it is for me. I'd send you all cookies, if I could...oops, no sugar! TS
Posts: 566 | From West Coast | Registered: May 2008
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jamescase20
Unregistered
posted
I would go on virgin coconut oil, and MMS if I was you.
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posted
I have raging Bart also, and I am stuck for the moment. I am allergic to Bactrim, Levaquin, and Rifampin, so my doc isn't sure what to do anymore. I just got that new book by Dr. S and am trying to find enough clarity of thought to read it.
Posts: 220 | From central TX | Registered: Jun 2005
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Texas Chaos, I think it would be useful to consult the Cowden Protocol and Zhang Protocol. Investigate those.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
BAsed on what you are taking I would not recomend LEVAQUIN.It is too strong and you do not wnat to cause " A BIG HERX" and inflamation on your body.
The only thing that you can add right now is HH capsules...slowly 1 capsule..up to 5 spleet them during the day!
Blood thiner is important whichever you can take , WOBENZYME , NATOKINASE, if varfarin than go for it -it will work in bart and babs ...to not let them to be attached to the RBC and WBC.
I have noticed ( my eksperience) MSM not (MMS used it too on a holliday break only 1 day though) will carried the efects of the drugs even deeper on the cells ( I forget to take it sometimes) .MSM also will make the bugs be detached from the cells.So why they are not sucking us up you get your antibiotics to kill them
That is why people take it for arthritis as it goes deeper in the cell( know that from veternas in CUREZONE .com).
Anyway ...Again only lower dosages of RIFAMPIN and capsules of HH.
YOu need to work against BABS now.YOu can not stop treating babesia as it wil become resistant if you go fully force to treat BART.
You need to be in artemisin and mepron ( in very high dosages -Dr J S knows the protokoll for adults) .Otherwise you can take lower dosages for LIFE and you will not eradicate it.THe body does better fight against the other pathogens while you reduce their load and than target one at the time.
HOPE and wish that you do not have the BLO/HEMObart /OR muc spp strain.I think and do beilive from my own eksperince that this people hav chances of relapsing.Sorry to disapoint.
OK the one that can take IV and can reach them DEEPER.My ins will not PAY for it.
LEVAQUIN is VERY STRONG and has many side efects.I would live levaquin for the last one.AS the final choice after I would treat it with HH capsules , Flagyl , Rifampin and azithr for a while ( 1 year).Than jump on levaquin.
I am on levaquin for the 3 rd time ( could not handle that in the first time due to tendonitis) .Restarted on my won risk .WORK wonders...Relapsed quickly back when stoped in a month. STARTED for the 3 rd time.BETTER than ever for 1 week of it.
YES whoever is treating BABS first they definitly need something to keep bart in check...FOR ME IS UGLIER that BABS!!
I see it at my son and at myself.
Feel free to PM me with any questions.
YES I feel that peopel should cover all the bugs on their combo in the begining.Otherwise when you hit only one ...the others get UGLY!
FIRST you need to know what do you have and than include in the protokoll treatment for them all.
EHRLICHIA used to be the first.LASt conference they changed the turns.
I am glad I did that on my own and saw results.Treating BART BLO is the first one than BABS while still treating lyme and the rest..and keep bart/BLO in check.THAT IS THE TOUGHEST!
I am not a doktor -that is just my eksperience sharing WITH YOU ALL!!
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I remember when I started treatment I fully expected to be well in 5 months. Well, 2 years of treatment..I am still symptomatic. I have only slightly improved and I have pain unbelievable at times, mostly neuro.
For me, Bicillin shots were the hardest (emotional herx) and yet the best improvement. I am going back on them, because I feel like I have lost some ground since stopping them.
With co-infections and Lyme it can take time, I know you don't want to hear it, but it is true. The diseases are removed in layers, one at a time.
ILADS claims 1-5 years for chronic lyme improvement.
Hang in there..you will see improvement - 5 months is not really that long to see a lot yet. I know I didn't - and really the improvement is so slow if I didn't keep a diary of daily symptoms, I wouldn't think I had improved at all..but I have. Keep a diary..you would not imagine how fast we forget we had a symptom once it is gone. Having a diary will make you think...oh yeah, I forgot about this or that symptom.
I'd be interested to hear what your LLMD thinks. Has he suggested IV yet? Or IM injections?
lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I know it's hard to say hold on when you feel like this. The first time on IV, I was on rocephin for 6 mos before I felt a little back to myself. Every llmd has a different protocol -bartonella is so anxiety causing. When things got that out of control, I took a half a xanax just to recoop myself. I never abused it, but I had to function for myself, son and husband. My son has lyme also, he's 13, but its dormant now. I know the feeling when you're a parent and you feel like this. Feel well, have patience. I know you don't want to hear that again, but I've been there and its passes. You really learn the meaning of make the best of every day with this. One day at a time. Thats all I do cause I never know from one day to the next what happens. feel better
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
Thanks again everyone. You're right...it's hard to hear to be patient when you feel like you're stuck with no improvement. I keep thinking...maybe next month, maybe next month, grrr.
Lymebytes...my LLMD does not do IV, but said if I don't have better results within a few more months, she would refer me to Dr. H in CA for evaluation and possible IV.
I am going to take advice from many of you on looking into more bart tx before pursuing any IV route and see what happens. I am reading up on it more.
I always feel a little weird sort of directing my tx with my LLMD. She is good, but still learning herself I think; she seems open to my ideas.
I am going to ask about adding Rifampin right now. I think I have 2-3 more months with Mepron (would be 5-6 months total on that), once I finish that would like to try Levaquin as well. One thing on when to stop babs tx...how do I know? I have so many infections and so many symptoms overlap...I don't have any idea what is causing what.
I tested + for Bartonella henslae with IgeneX. After I am done with treating babs, should I stop abx and test with Fry for BLO's? I am wondering if it really matters....couldn't I just treat with bart rx's, no matter if it's BLO's or straight bart?
Anyway...thanks for ALL ideas, help. Hopefully, my LLMD and or LLND will agree to adding the Rifampin, assuming they see no neg rx interactions with what I am currently taking. TS
Posts: 566 | From West Coast | Registered: May 2008
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