posted
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
Posts: 158 | From canada | Registered: Jan 2010
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posted
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!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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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
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
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.
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
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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It sucks, I know, but just remember that it can be done!
Keep up the killing...like Nike...Just Do It!
~Tri
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
lol, the question that is running through my head right now is am I killing anything or just wasting my time ....
Posts: 158 | From canada | Registered: Jan 2010
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posted
I ask myself that very same question, Kuda, every single day!
We are...it just seems like one at a time!
Hang in there!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
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.
Posts: 1834 | From US | Registered: Oct 2008
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posted
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...
Posts: 158 | From canada | Registered: Jan 2010
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posted
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.
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
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?
Posts: 158 | From canada | Registered: Jan 2010
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posted
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.
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
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.
Posts: 44 | From New York | Registered: Feb 2011
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