posted
I am seriously debating staying on IV therapy. I had port put in and started IV therapy in August of 2006. After a short month I was told that I had gallstones and needed to have my gallblatter removed.
I switched IV therapy to Claforan for two months but after getting fired from job had to stop all treatment except orals. This surgery also caused my babesia to become active so I was completely drained.
Now, I am back on IV therapy Rocephin. It's been 2 months and not a lot of change or progress.
Infact I have had some werid things happen. My fingers turned greyish blue. Like when you look at a dead person their face looks that werid greyish color. But only my fingers, not my toes. Also no associated temperuature with fingers-not hot not cold-Dr is very puzzled.
I also have chronic hives again that won't go away unles on Valrex-we don't know why?
I have gained about 8 pounds-she's going to check my thyriod.
Now Dr. Lyme wants me to do a vitamin C drip. She thinks this will help my line stay clear or something. Not too sure about all this.
All these things add up to a huge sum of money upon which I cannot pay. How do they expect people to pay for all this stuff.
I am thinking about stopping all treatment. Going back to orals-and hoping that all the work I've done will be enough. I am already so far in debt that to continue would be disaterous for my life.
I have no college degree because of this, I have a job that's overwhelming-especially when you factor in all the infusing and stuff that goes along with IV therapy. Also doctor apts-not just for Lyme doctor but for all the other areas where my health has deteriated.
ugh, I have no more energy for this-what should I do? What are your thoughts?
thanks, Lindsay
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I don't know if it is or will be for you!!!!
For me it saved my life. It did not help me until I was on it for 7 months- the first six- nope!!!!!!!!!!!!!
I had given up!!!!
I don't know what will happen with you!!!
It could kill you. It could save you.
I would go with what your doc advises because he knows your treatment history!!!
Especially if you are seeing Doc S!!!
For me it gave me my life back. Also everyone locally who I know with Lyme has gotten great gains on it- except one guy withlate-stage ALS symptoms who died after one and a half WEEKS into Rocephin from c. difficile. He was so weak- Other than him everyone I know who has stayed on who was NOT responsive has BECOME responsive- but I don't know the future for you! Take care- Best wishes, Sarah
-------------------- 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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posted
I am on my 5th month of IV Rocephin. I would not give it up for anything. I have my mind back, first and foremost. I take diflucan and did one month of tindamax also. I am taking a much needed break from Tindi. I feel pretty good, I must say.
My LLMD said he does not usually see a response in people for 4 months. How long have you had the Lyme?
If you have a good LLMD, ask her what her experience has been.
I am beginning to use some of the herbs in Buhner's protocol. I do not intend to be on abx forever.
I think if you have the port, keep it. I would not give up my PICC line for anything.
"Illnesses, hover constantly above us, their seed blown by the winds, but they do not set in the terrain unless the terrain is ready to receive them."---Claude Bernard. Posts: 131 | From US | Registered: Dec 2006
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posted
my doctor works in Dr. S's office. She is a great doctor, probably one of the best that I've ever been too.
But at what cost do you say enough, at what point do you say I gave it a shot and I'm done?
I am 22 and have had lyme "symptoms" since I was 12. I have been in treatment for 2 years in June and I have been on Rocephin for 2 months. Plus one month back in August.
The first time I did rocephin, even though it was only for one month I felt so much better. I could walk like I used to, my mind seemed more clear etc etc.
This time, I feel no difference in being on it-Sometimes I think maybe this is the best I am suposed to get. Maybe I will never be any better than what I am now, and maybe I should just stop and be happy with where I'm at.
I have made tremendous progress, vomitting stopped, hives gone for the most part at least with valtrex, I can walk long distances again-I still have no energy, numbness and tingling, ringing in ears, lyme fog, nerve pain, can't eat lots of carbs-
I don't know anymore...It's not that I don't trust my LLMD. I completely do, but all this is so overwhelming. My life has been completely stopped. I have missed out on a lot of things in the last two years because I am just too sick to do them. This has been so encrediable difficult. Not just being sick, but everything that comes with. Leaving school, paying all these bills, moving back home with my mom, being dependent on my parents, not being able to go out with friends.
Lindsay
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
I know it's always easier said than done...
But take it this way: as long as you have your health back, you'll have your real life back and win all that you deserve, not to mention the bills, which you will surely pay off with plans.
I hope the financial burden is not as heavy as lyme.
Posts: 196 | From atlanta/norcross, georgia | Registered: Feb 2007
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
yes. My IV was worth it. I felt the best after my IV on many levels. The herxing was brutal & so was some of the costs. But in the end, for me, yes it was worth it. The orals trashed my stomach & didn't seem to hold me as well in the neuro & energy department.
It's different for everyone & so must make some heavy duty choices.
good luck & hope in whatever path you take you can feel better soon
Blessings Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
I just got my third round of rocephin delivered today . . . another three month's worth. Dang! I wanted to stop too, but my LLMD said keep going.
I feel for you. My daughter is 19 and has had this since 9. For her, rocephin is working very slowly. For me, it is working steadily and clearly.
However, that's not the only thing I do. Have you been treated for the coinfections, even if you did not test positive for them? Mepron earlier on for me was necessary.
good luck. I wish I could say stay with it, you have made improvement, but it is up to you and your doc.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Liked reading your input, Dana. I think my hubby will probably have to go to IV after a couple of months.
Do you feel like you are cured now? or are you still taking ABX and supplements?
I enjoy your posts. Thanks.
Posts: 1366 | From Southeast | Registered: Sep 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
hi boomerang
Thanks. No, not cured but in partcial remmission. Having lyme 20 years don't think I will evevr be able to use the word "cured". Remmission maybe-might feel the same though someday
I did feel the best after 6 months IV. I was even well enough to get back to doing my sculptures for close to a year. But the follow-up orals didn't seem to hold me as well as the IV and my stomach gave out as well. I am now doing rife & supps & it seems to be holding my progress so far. Knock on wood. Have my ups & downs like everyone... In a down phaze at the moment from overdoing it too much recently.
But if offered to do the IV again I would do it all over again. I was lucky in that I had no complications or infections from my pic line. I may have felt different if this had happened.
IV is such a personal choice. But all I can do is contribute my personal story and opinion here.
Others have a very different exprience but this was mine
Blessings Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Hey. I have been on IV twice. The first time I was on it for 27 weeks. I did show improvement for while but started to decline after a few months. I went on IV again several months later. This time I was on IV for over 1 year. I had a very hard time over this year. I would gain 40 pounds over about two weeks and then spend about 6 weeks throwing up and having severe diahrea. I would drop the 40 pounds during this time. About a week later it would start over again. The cycle continued most of the time I was on IV. My doctor (Dr. J.) tried everything. We could not figure it out. Finally I began to figure out a pattern. It had nothing to do with the IV treatment. I was on Depo Preva because I had very hard periods. I began to notice that every time I had a shot the cycle would start over. I quit the Depo shot and soon was feeling much better. In my opinion no one should take Depo. It can cause so many problems. After stopping the Depo I began to improve quickly. I had about 1 year of feeling almost human. I feel like I was in remission. Unfortunately things are worse now. I had a Hysterectomy in December. Since then I have been getting worse. I see Dr. J. and because of the NC Med Board he has not been able to treat me the way I need to be treated. I am a whole lot worse now. I begin intense oral therapy the end of this month. In my opinion the IV treatment was worth it once I got off the Depo. The surgery caused my symptoms to come back. If I was in remission I am not now. I would definitely consider IV therapy again if it were an option. Due to the medical board I don't know if Dr. J. will ever be able to treat as aggressively as he has in the past. The NC Med board decission has really caused alot of unneccessary suffering in the Lyme community.
-------------------- NC PLEASE GIVE US THE MEDICAL HELP LYME DISEASE SUFFERS NEED!!!
Rhonda Posts: 24 | From Mount Holly, NC 28120 | Registered: Apr 2007
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Vanilla
Unregistered
posted
I am wondering how LLMDs decide who gets IVs and who gets orals? I have never been offered an IV yet. Just wondering???
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posted
My doctor is Dr. J.. According to him, only about 20% of his sickest patients go on IV therapy. Alot of the decission for me was based on the neurological problems I was having.
-------------------- NC PLEASE GIVE US THE MEDICAL HELP LYME DISEASE SUFFERS NEED!!!
Rhonda Posts: 24 | From Mount Holly, NC 28120 | Registered: Apr 2007
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Vanilla
Unregistered
posted
Will the famous Dr. S. started me on orals and my latest LLMD has kept me on them.
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The thing that stands out is that you have a rash that only improves with valtrex. This sounds like the work of virus's.
Can you tell me if you have been tested for opportunistic organism?
I only say this because I have noticed that there are a group of people who will not respond well to antibiotics.
I have met a number of them and they seem to have two things in common. They are either heavy metal toxic or they have high viral loads.
In other words, they have a long history of virus's. If this is the case you probably should try to address this first. Your immune system will respond better if you lighthen the viral and toxic loads... IMHO
Blessings,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
For me IVs have been absolutely worth it. I've been on IVs 4 times. The first time was in 2002 when I did 4 months of Rocephin followed by 2 months of IV Zithro and I got a lot better but had to stop due to insurance cutting me off from it. The second time in 2004 I was on Rocephin again for about 3 months but that time it didn't help at all. Then I did IV Clindamycin in 2005 for 3 months and IV Primaxin for 3 months - the first didn't work but the second one was really helping but had to stop due to complications.
Now I've been on IV Primaxin again since mid-September so I'm just finishing up my 7th month (with a 3 week break due to insurance stuff) and it is helping me so much.
Keep in mind that Rocephin may not be able to help you again on this second time around, possibly due to antibiotic resistance - the strongest bacteria that didn't get wiped out during the last round of Rocephin has been able to multiply so there may be a lot of bacteria that just won't respond to Rocephin. But there are other IV meds.
It's your decision and none of us can tell you what will or won't work for you. Even if you stop IV treatment, though, I would recommed keeping your port for a little while just in case - you never know what might happen when you stop the IVs and having the port taken out and another one put in later would be a pain. I love my port and don't know what I'd do without it!
Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
That's one that hubby has not tried.....diflucan. He's been on Nystatin. Is the diflucan supposed to be better?
Posts: 1366 | From Southeast | Registered: Sep 2005
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And I thought you didn't get diarrhea from IV abx? I thought that just happened with the oral abx's?
Posts: 310 | From TN | Registered: Jan 2007
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
I was on Rocephine IV for 5 months but was then switched to a rotational treatment plan as I was told Rocephin or penicillin would push the spiros in to cyst form and therefore it was needed to get the massive infrection load down but then you needed to treat all forms. So I switched then to:
Bicillin for Motiles Ketek for L-forms/Intracellular Tinidazole for Cyst forms
6 weeks IM Bicillin and add Ketek after 2 weeks for 2 weeks and then stop Ketek and add Tinidole for 2 weeks Then off all to let spiros appear and back around again.
It really is helping
Posts: 1172 | From UK | Registered: Jan 2007
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