Ahhhhh I am so sick of this. I did 2 years of orals with some improvement and declined in other ways. More decline than improvement. MRI with 15 brain lesions 4-5 years ago, positive Igenex Lyme IGM 4 years ago...
Should I just accept my original MS diagnosis or stick it out with IV. I find myself so depressed and feel very hopeless ...
I am not suicidal but I am sure many of you have felt the feeling of just not wanting to be here anymore... I just want out.
Tonight will be my third infusion of IV doxy, but with the first two I haven't felt a thing. I don't know if I can take another failure with treatment...
Sorry I am just soooooo angry and frustrated...
Kuda
Posted by Lymetoo (Member # 743) on :
If your lyme test was positive then keep treating!! I'm sure you are exhausted. If you "accept" your MS diagnosis then you will be treating with steroids.
I don't think that would be a good idea.
Have you treated for babesia yet?? Here's praying that you will find the right doctor and the right combo of meds that YOUR body needs! Posted by lymekuda (Member # 23972) on :
Thank you Lymetoo.
I am just so tired of everything. I know steroids would be bad, I took Rebiff "MS med" for a 15 months and didn't do great on it...
No I have not treated for babs yet, I do not have any of the symptoms. My LLMD treated me for bart because i was showing symptoms for that.
Thank you again for the nice words. Posted by triathletelymie (Member # 26456) on :
Hey Kuda!
I am in the same boat! It sucks! I have been treating with orals for 11 months, along with 10 weeks of IV rocephin and now two weeks and counting of IV doxy! I, too, have seen limited improvement and want out, too! I have questioned my lyme diagnosis, too...but if you are Igenex positive for it, you have it and need to keep treating it! They are tough bugs...but we have to keep on the attack...even if it seems like one kill at a time!
Hang in there!
~Tri
Posted by lymekuda (Member # 23972) on :
Thank you Tri,
Yeah it is just hard and tiring... I have had it up to here with treatment...
My problem is, if I do have Lyme I have had it for 15 years going on 16 now...
Thank you so much for writing.
Posted by Lymetoo (Member # 743) on :
A trial run of babesia meds might be a good thing to try. You never know. Dr B says not treating hidden coinfections like babesia is the number one reason for treatment failure.
Posted by lululymemom (Member # 26405) on :
Dr. H. always trys a trial run of Cryptolepis if he suspects Babesia.. I would highly recommend this as Crypto was very helpful to treat my daughter's babesia.
Posted by lymekuda (Member # 23972) on :
Interesting, I will call my LLMD tomorrow and ask him about it. !
Thank you!
Posted by lymekuda (Member # 23972) on :
Could the Lyme germ in my body have built up resistance to Doxy?
I have taken it many times before for 1 month at a time over the years.
My LLMD doesn't seem to think so, but I kind of have to disagree?
Posted by triathletelymie (Member # 26456) on :
'Welcome, Kuda!
Just keep hanging in. I know it's difficult...'seems impossible at times, but there are folks on here that have been sick longer than you and I combined and they are well.
It can happen!
~Tri
Posted by lymekuda (Member # 23972) on :
I hope so Tri, I really do!
Thank you for the kind words!
Posted by triathletelymie (Member # 26456) on :
Anytime, Kuda!
It sucks, I know, but just remember that it can be done!
Keep up the killing...like Nike...Just Do It!
~Tri
Posted by lymekuda (Member # 23972) on :
lol, the question that is running through my head right now is am I killing anything or just wasting my time ....
Posted by triathletelymie (Member # 26456) on :
I ask myself that very same question, Kuda, every single day!
We are...it just seems like one at a time!
Hang in there!
Posted by karenl (Member # 17753) on :
With MS - have you been tested for cpn and do you know about cpnhelp.org.
Many MS peole have cpn and lyme. Pm if you need more.
Posted by lymekuda (Member # 23972) on :
Yes I have thought about that, and am trying to get tested for it soon. I have taken so many antibiotics wouldn't it be gone by now? CPN that is?
The IV doxy has been giving me vertigo/intense dizziness... We are going to try to change the dose to 200mg rather than 400mg over 2 hours...
Posted by triathletelymie (Member # 26456) on :
Kuda...my visiting nurse said that the doxy infusion should only be 100 mg per hour...she said that if it is too fast, you will have dizziness, headache, etc.
Posted by lymekuda (Member # 23972) on :
I will try and slow it down. I think I am using 500 of saline right now. How many are you using for your 300mg of doxy?
Posted by triathletelymie (Member # 26456) on :
I mix each 100 mg vial of doxy with 100 mL bag of saline...so 300 mL of saline total with the 300 mg of the doxy.
Posted by Suzy50 (Member # 30466) on :
I have a diagnosis of MS (not on treatment for it) and had chlamydia pneumoniae, which was tested at VIP Diagnostics. The treatment for cpn for me was doxy, zithromax 3 x a week and tinidazole. Treatment was successful. Now I go on to treating lyme. Hope this helps.
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