posted
I have had lyme and co-infections for over 14 years, probably around 16 years. I am 20.
I have lived in constant pain most of my life.
I figured out what was wrong with me, and started treatment 4 months ago.
(Rocephin 4 days a week 2 times a day. Pulsed tindamax, flagyl, did 10 days of zithro and mepron before doctor said i was too sick to continue)
I have not seen ANY improvemnet in the 4 months. All my symptoms and pain has just gotten worse.
My doctor told me today that the meds simply are not working. He told me He was going to use "the hammer". The most powerful drug he has found against this, some sort of antibitoic froma fungi. I was to start it tomorrow, and if i was not allergic to it, would get a picc and do it every day for the next month.
Then his nurse called me saying her and my doctor had a chat over lunch and decided it would be best if I took a month off of all meds.
I have heard that if you stop treatment for a while, and you clearly are not better from the lyme, that it comes back real quick.
I am worried I am going to loose the ground I might have gained! Plus, I do not want to go another sec in the pain I have lived with every single day since i was 4.
One more month added to that honestly just seems too long. I do not want to lalygag around this. I want it treated ASAP. Not one month more added to this wretched thing i have had to call a life.
I am just really having a bad week... this on top of my bank (some employee) stealing my identity and messing up my credit, along with stealing the 70 dollars I had to my name... oh and then charging me 100 for their mistake...
I just needed the good news that I would be starting a real treatment that would kick this stupid Lyme disease, babs, ehrlichia and anaplasma... never can get any good news...
Ok, if anyone has any opinians about what going off of Lyme treatment for one month after not experiencing any improvement, please leave a post.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I was on abx 18 omnths before I began improving and form then on it was 3 months to 95% and then with Mepron to 99%!!!!!! But for 18 months, 1 year orals and then 6 months iV, I declined WHILE ON ABX~!!! It takes TIME.
Is your doc a real LLMD???
Don't give up!!! Find another doc who knows more about TBDs or maybe your doc knows something re your history that is leading him to treat you in this way medically- I don't know!!! I would ask!
Take care-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Did you have labs done?
Is it possible that your dr is responding to some bloodwork results?
(like high liver enzymes or something?)
I would want to chat with the dr myself and find out his reasons for requiring a month break from treatment and then raise my concerns.
posted
Well, my labs are good. My kidneys are ffine, everything is fine. My white blood count is low, but it always has been.
My doctor is the only real LLMD in the state of FL, from what i am told.
I just find it really odd that he is confused that I am not the slightest bit better after 4 months of abx when I have had this for over atleast 14 years.
I just do not want to make things worse... I do not want the lyme to really take over when i go off the abx for a month.
what worries me is that, i do the abx 4 days a week. when i go off the meds for the 3 days, that is usually when i feel worse... I dont know...
posted
Oh, and when the nurse called me to talk about it., she told me that she thinks my symptoms now are from serum sickness.
1. All my symptoms are the EXACT same as they have been for the past 13 years, the only thing is it hurts with more intensity, and everyday where as before it would be 4 days a week of the real bad pain, 3 days of medium level pain. Now its 7 days a week of a 7 or higher. this is all in my joints (hips knees ect) and muscle.
2. I told them about the babs flairup i had at the doc visit. When she called she told me she thinks that was serum sickness. Problem is, I, for the past 6 years have been getting fevers with severe neck pain and head pressure and pain. It actually is a mild brain infection when it happends. Essentially meningitis.
But, for some reason, this time was unlike the 1000 times in the past this has happened? I dont think so. All it means is the 10 days of not full treatment for babs did not take. and I got the same symptoms I always do.
I do not know why they think that the symptoms I have AWAYS HAD all the sudden are not from lyme but because of being on rocephin for 4 months (and I have never improveed in the least bit, so itts not like i got a little better and then began getting symptoms again.)
I just find this all weird. As if I do not know my body and the pain I have lived with for the past 13 years. I mean, If it were a different kind of pain, then i would beleive them that it was a serum sickness, just does not seem plausable when I have ALWAYS felt this way.
Does anyone else know about this "serum sicknes"? or have any experience with it?
I could be wrong about my symptoms... but I honestly do not feel that this is what is making me sick. Not when all these years it has been lyme... I dont know. Her reasoning just did not make much sense to me.
savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
I only got serum sickness while infusing IV rocephin. I wouldn't exactly describe it as painful, but it is scary. About 10 minutes after infusing I would experience a electric shot type of feeling starting in my feet and then working its way upward.
At first, Dr thought that it was an allergic reaction, but after allergy testing, and no allergy to rochephin, they concluded that it was serum sickness.
Is it possible to find another llmd? I know that you are seeing a doc in Fl, but is there another way to get a second opinion?
I am sorry you are going through this. I hope you find help soon.
Posts: 1603 | From ny | Registered: Aug 2006
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1Bitten2XShy
Unregistered
posted
Sky-
Sorry you are having such problems. I have had a similar problem with this nurse, but not to this extent.
I would HIGHLY suggest you call Dr. and ask to speak with him and only him. He has called me back after hours, on his cell, on this way home.
You know he does listen, tell him the things you are feeling and why (such as you have done here). Although I would not tell him you thought she is a control freak
I know of one other person that was seeing him, and kind of like you, she had no improvement after IV etc., and she has chosen to fly to PA for treatment.
When he felt 3 weeks of Mepron was enough for Babs, I spoke with him, told him why I felt it was not, and he was more than willing then to continue the treatment, as long as all my BW was OK.
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I am pretty tired and my brain is flickering in and out so maybe I misunderstood...
did you say you have babs and only had 10 days treatment?
Did he expect that to "fix" the babs problem? If you search through this board I cant remember anyone saying 10 days kicked the babs for them..
Quite honestly in my own case I think that the reason that I havent made a real recovery has been in large part due to the babs being present and me not knowing...
I also think this may be the reason that even with a few days off abx I relapse fast and hard.
But this is just my opinion as a lyme patient.
I would take bitten's advice and speak directly to the dr. See if he is willing to continue treatment and if he thinks that more coinfection treatment is necessary...
If you dont like his answers I would try to find another lyme dr.
posted
Well, I thought about it, and I am just going to have to wait a month and see. The nurse said if I started 'craching' i could call them and we would figure something out.
We will see I guess. Maybe I will start feeling better...
Does anyone else have any experiences with Serum Sickness?
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