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what are others' experiences with long term abx who have been ill many years before diagnosed?

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Posted Yesterday 10:53 PM (GMT 0)
feeling discouraged and wondering what others' experiences are who have been ill for many years before stating abx for lyme. my husband was diagnosed 20 years ago with Chronic Fatigue. Most likely has had lyme for 20 years. After I got lyme in '07, he got tested and has lyme, bartonella, babesia and rocky mountain spotted fever. Ever since starting abx 8 months ago, he has just gone downhill with increased fatigue, neuropathy, pain and cognitve memory problems and brain fog. He started IV rocephin 5 weeks ago....more fatigue and more cognitive issues but improvement in body pain. He was functional before starting lyme tx and able to work. He was treating the CFS with immune support and detox. He has been disabled for the last 5 months. Does this get better? Kids who are in early 20's are home for Thanksgiving and concerned about how much worse he is and wondering if he is being poisoned by the abx.
At least he was functional and able to work with and around his fatigue before starting abx. The abx has brought out all his worst symptoms and he is very sick now. Is this normal? I know that often it is, but- how long? I could really use some feedback from others. Thanks.
Posted Today 1:58 PM (GMT 0)

Hi Leslie-

I am not sure how much help I can be but since your husband and I share horrific fatigue as a primary symptom I thought I would try. I know when I started abx they did nothing at all for me and I actually felt worse on them. When I was diagnosed with CFS I still worked although part time and I was still running. I was told to just do what you can and maybe it will go into remission. Okay that was what I would do. Then I started abx and within a few months could no longer run-had to cut my hours again and just really felt horrible and it wasn't due to herxing.

I began to question the Lyme diagnosis since I didn't have a positive test just some activity on 4 bands. Then I was tested for co-infections and came up with the pos bart titer. I guess I am trying to say that I only felt better on the Rocephin. Orals did nothing but give me side effects and make me feel really bad and  I had even less energy. I do believe alot of the times it is side effects we have and not herxing. I have basically had it with orals because they have done zero for me.

I think if your husband can keep on the Rocephin a few more months he will see improvement. Sometimes it can take months especially where he has been sick for so long. I was only sick 2 years before diagnosis. I think when you see John you could talk with him about this. I am so sorry your husband has declined even further and sometimes I feel like I am heading that way too.

I had a bart rash on my stomach a couple days ago and took a picture of it for John. I am not even being treated for bart right now and that scares me too because I was on Rifampin for 8 months and apparently it isn't gone. Sorry I can't be of more help but I totally understand how you are feeling. Keep in touch okay.

Kim

Posted Today 3:11 PM (GMT 0)
I don't know if this will encourage you or discourage you. When I was finally diagnosed with lyme (we believe after 5 years undiagnosed) I was told I would get worse before I got better. Well, I had no idea at the time just how much worse I would get and how long it would last. I went downhill fast and got so much worse the first year of treatment. The second year of treatment I did start improving, but it was slow. I stayed on abx for approx. 30 months (2 1/2 years) before I was completely well, but I did get there. Stay with it. I also used exercise to get better once I was strong enough to start and I started very slow and as I got better could do more.
Posted Today 5:57 PM (GMT 0)
I don't know if this helps or not but when I was pretty healthy -- for the most part -- I never had a reaction to antibiotics like I do since I tested positive for LD and started a regimen of biaxin and doxy. Now I have good days -- usually when I'm eating right and exercising and getting proper rest -- and bad days -- bad moods, woozy head, neck pain and other issues.

I don't know if this is the regimen that will cure me -- have been on it about 5 weeks or so. Have seen *some* progress -- but not where I once was pre-Lyme.

Perhaps ask a doc about switching out antibiotics to find something that won't impact him so terribly while recovering.

i really hope he's well soon.
Posted Today 6:48 PM (GMT 0)
Lill: It was something that you said in your post, "he was managing with immune support and detox" that made me write. I have Lyme and have probably had it for 15 years or more. I was given the CFS diagnosis and found out I had Lyme much later after being exposed to mold and getting very ill. I turned it around with supplements and sauna. Never missed a sauna in 14 months and it was SO helpful. So, I did not the antibiotic route (YET) because I have immune deficiency. You had said your husband does as well. Did he ever try IV-IG? (gamma globulin IV) I am about to try it, have an appt on Monday with my immunologist. I would see if there is some other way your husband can get his system back to where it was at lease. Your post is the very reason I am realuctant to do the antibiotics, I dont believe my system could handle them right now the way my immune system is. I am sorry for his pain, and yours, as it is hard to watch someone we love suffer, especially when we feel helpless and cant find answers as to how to help them.  D

Posted Today 7:05 PM (GMT 0)
Dowa - What kind of sauna? I think it does help!
Posted Today 8:31 PM (GMT 0)
Hoping: It was an Infra-red sauna. All glass sauna with poplar wood benches. I did not own it unfortunatley, did it at a detox clinic. They have a web sight. www.heavenlyheatsaunas.com I dont think I would be able to handle the portable ones that people use here because of sensitivity to smells. The wood and glass ones are great and I think a single person one will run you about $2500. They are made VERY well. It was just magical for me and I miss it so much- D
Posted 12/4/2008 12:46 AM (GMT 0)
Hi. It's been a few days before I could write, discouraged by losing our insurance appeal for continued IV rocephin, questioning kids and husband not getting better. Kim(kpt812), my husband's devastating fatigue sounds similar to yours. I hope you find improvement again with the rocephin. I know my husband needs to give it more time. We have an appointment with Dr. H next week with lots of questions. Like you, my husband just got sicker on the orals and all the antibiotics so far. He's having some days better cognitively and with some energy, but overall discouraged.
Thanks for your support. Please keep me informed about how you're doing. I hear your concern about the bart.

Dowa- your case also sounds similar. My husband was doing much better with detox and immune support. It's hard to know what the best thing to do is. He hasn't tried IV-IG. Let me know how that goes for you.
Posted 12/4/2008 1:50 AM (GMT 0)

Leslie-Please let me know how the appt. goes. I sent a pic of the bart rash to John because I am truly concerned that it is still a problem. I didn't know how to describe it to him. I haven't heard anything as of yet. I still don't have the appt. for the Picc line. I spoke with my doctor here yesterday and was hoping to hear back today. I feel like I am really slipping backwards again. We will be mixing the rocephin ourselves since our insurance will not cover it. I will be pulsing Zithromax too.

The fatigue is so horrible all the time. Some days I can work through it but others I find myself laying in bed unable to do anything. Most days I can't read or watch tv because I am just so tired. I really think the Rocephin will help your husband if he can keep on it. John has basically told me I will be on it a year or more. So it just might take more time for your husband to really feel better. It definately helped tremendously with the fatigue. There were days when I didn't have any at all. There is hope.. Sometimes I feel as though I was better off before the abx and taking them just stirred it all up. I will be very interested to hear what Dr. H has to say. Please take care and keep in touch.

Kim

Posted 12/4/2008 2:03 AM (GMT 0)
Kim- thanks for writing back. My husband too sometimes can't read and used to be able to work before the abx and wonder also if the abx has stirred it all up. If there is so much bacteria though, I would think that reducing the pathogens in the long run will be beneficial. My husband is mixing the rocephin himself now also, since our insurance only paid a month. We got a pretty thorough, nasty letter from the insurance company that threw me off kilter- questioning everything. This next appointment is with Dr. H, and I'll let you know what he says. Do you take glutathione also? When my husband takes the glutathione, he falls asleep for an hour and then is speedy and has insomnia and exhaustion for 2 days...

I'm sorry you've slipped back so far after making so much progress with the rocephin before. It should work again and this time with longer tx, hopefully it will hold. Please keep in touch too. Let me know what John says about your bart rash. Take care.
Leslie
Posted 12/4/2008 1:14 PM (GMT 0)

Hi Leslie- Yes I did try glutathione I think in April or May. It didn't do a thing for me. I believe I had 12 treatments and my doctor said I would have noticed a difference right away if it was going to help. You might ask Dr. H about pulsing another abx along with the Rocephin. I am not sure why they have decided to have me do that.

We had a nasty letter from insurance also but you know they don't want to spend money on people with Lyme. That is what it all comes down to just plain money. It is a shame when we have to mix our own medications and travel distances to get treated.

I will keep you posted on what is going on with me. I was suppose to see Dr. H at the end of the month but since I don't have the Picc yet I am not going to make the appt. I would rather see John so I might just make an appt. with him instead. Have a safe trip out to NY. Things will get better..we have to believe that.

Kim

Posted 12/4/2008 1:58 PM (GMT 0)
Hi everyone,

I'm just trying to be pre-emptive here as I'm about to start IV ABX. When your insurance company stopped paying where do you go to get you ABX and how much was it a month? Thanks!
Posted 12/4/2008 2:48 PM (GMT 0)
Hi lillimul,

I'm sorry I don't have any assistance for you. I just wanted you to know I am in the same boat as your husband. I was just diagnosed with lyme this year after supposedly getting it in 1979. I do remember the tick...it was on my head and had been there for a while (it was huge). I was a kid with long hair so it was easy to miss. Anyhow, I struggled most of my life with bouts of extreme fatigue, strep throats, bells palsey etc, it was only in the last 2 years that major joint pain, dizziness, mental fog and confusion etc became an issue, yet I was still managing quite well. Since I've been on the ABX it's been a downward struggle. While the joint pain is mostly gone, the fatigue is worse than ever and I have many more bad days than good and while I'm still working, it's all I can do at times and have missed more work this past year than the past 5 years combined. It's so frustrating and I just don't know what to do. I actually have an appt at Mayo clinic next week. Not sure why or if it will help, but my LLMD isn't covered by my insurance, my expenses are getting out of control, and at 38 years old, I'm so tired of feeling this way. I will keep you posted if I find anything that works, and as I said, I'm sorry I have no help to give you, just for you to know there are others in the same boat. This lyme thing really sucks!
Posted 12/4/2008 11:14 PM (GMT 0)
Wow, I read this whole post and I tell you, I have been criticized for not going the abx route, but as you all have seen, I am worried it will put me down even further. It is SO confusing and almost impossible to make a decision about which way to turn.   D

Posted 12/5/2008 12:44 AM (GMT 0)
I truly appreciate all the posts on this topic and how confusing it is to figure out the best treatment approach. It seems like pulsing the abx can be a helpful option and one we can talk with the doctor about next week. Not that I want anyone to be ill, yet its helpful to hear from folks who have also had diagnosis of CFS and FMS who then got diagnosed with Lyme years later. There is a correlation with the longer the illness the more difficulty with abx and die off/toxicity. It's so hard to see my husband go from a semi functional life to being incapacitated for the last 6 months. I've also seen someone else I know though go through several months of sliding on abx and then sliding on the first few months of IV rocephin who started getting significantly better after about 4 months of rocephin and now at 8 months of rocephin is so much better. I know everyone is an individual and there is no set course......confusing..... thank you everyone.
Posted 12/5/2008 1:30 PM (GMT 0)

Leslie-Just wanted to update you on things. I am getting the Picc in on Monday and what an ordeal that was! They wanted to put it in without using flourosocopy and I refused to have it done that way. Did it last year and developed phlebitis 4 days later and had to have the line pulled. My doctor here had to get on the phone with head of radiology and convince them this is how I must have it done. I was back and forth on the phone all afternoon trying to plead my case. Just what we all need when we aren't feeling well..more stress.

So I will be starting up the Rocephin on Monday the minute I get home! Dr. H's office did call yesterday about the rash. I guess John had given the picture to Dr. H to look at and he said he couldn't be certain it was from bart. Personally it looks like bart to me cause I have seen pictures but who am I to argue with him. I will talk to John about it when I see him again.

I will be thinking of you next week at the appt. and keep in touch to let me know how things are going.

Kim

Posted 12/6/2008 4:08 PM (GMT 0)
Kim,
Great that you'll be starting the Rocephin, finally, in a couple of days. The stress of pleading and dealing with getting tx is enough to aggrevate illness- glad you got things in place. Are you doing a PICC or Port? Do you see John soon to follow up on the bart question?
Lets keep in touch.
Leslie
Posted 12/6/2008 6:16 PM (GMT 0)
I have beeen on IV abxs 3 times in 8 years. The latest round seemed to be most helpful.... and I wish he would've let me stay on them. If my curent Rifampin and Levaquin combo doesn't work, I'm going to as about LOOOOOONG TERM abxs. I just might be one of those people who need it.
Posted 12/6/2008 7:10 PM (GMT 0)
jelainep- what was the duration each time you were you on IV abx? did it hold, did you slip back?
Posted 12/6/2008 7:52 PM (GMT 0)
The first time was 4 weeks - no improvement. I had been sick for 17 mos. finally treated with oral doxy, went back to work and then relapsed. After the relapse I had my first 4 week dose of IV Rocephin. At this point I had been sick for a total of 2 years and 4 mos.

The second time, when I returned to my inital LLDr. (I should have never left him), I was put on IV Rocephin again for approx. 6 weeks - no improvement. At this point I had been sick 7 years and 4 mos.

The latest round was 10 weeks of IV Rocephin which I did between August 2008 through October 2008 - I didn't feel like I was having much improvement, but when he took me off of the IV this time, I really crashed and burned. I have had a rough time since which makes me kinda want to go back on the IV for a longer period of time. I just have a sneaky suspicion that I'm going to be one of those long-term IV abx LD patients, but I don't care as long as it works! - for this round of IV's, I had been sick for 8 years and 2 mos.

In between all of this I have been on oral abxs... and I even tried the MD/ND route which was not successful for me.

Now I'm on Rifampin and Levaquin - which I happen to be tolerating really well - I know alot of people have touble with the Levaquin. Anyway, my LLDr. is going to keep me on this combination for 6 mos.
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