LymeNet Flash: Been on ABX for 8 months/no improvement

This is topic Been on ABX for 8 months/no improvement in forum Medical Questions at LymeNet Flash.

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Posted by lisag (Member # 6798) on :

Help:

I was dx in Jan w/Bb and Erlich after being sick for approx 1 year. Recently tested positive for mycoplasma and a bunch of viral things. I've been on a wide range of abx since Jan: Rocephin, Doxy, ketek, Rifampin, Zithro. Also may have osteo of the jaw...have had debridement surgery for this.

I have some days that are bearable and many more where I can't even get out of bed.

I just started doing weekly infusions of glut/vit C and other vitamins and minerals. I'm also doing daily shots of b12 and glut and taking tons of oral supplements.

I'm seeing very little improvement and am REALLY REALLY discouraged.

I'm working with 2 "excellent" LLMD's and various other MD's.

Does anyone have any ideas as to what my next steps should be. Doc is considering adding Mepron to routine. My husband tested pos for Bb and Babs. He's currently on zith/mepron..asymtomatic : )

I'm thinking of adding heparin (nasal spray). Also want to explore IVIG, but this looks like a tough one to get approval for.

Anyway I'm desperate to get better and am just looking for some good advice.

Thanks, Lisa

Posted by PeakdeSoul (Member # 7619) on :

Hi, this book helped me a lot with alternative therapies: http://www.lymebook.com

Hope it helps

Peak

Posted by Nal (Member # 6801) on :

Im in the same boat you are. I was sick for 6 years before getting diagnosed this past April. Ive been on many different antibiotics but cant seem to tolerate any of the oral ones. My next step is IV rocephine-we'll see if that one works for me.

Sometimes it takes the dr's quite a while to come up with the right combo of meds for you-try and hang in there. I feel miserable too so all I can offer you is a hug ((((((((((hug)))))))))).

Nancy

Posted by janet thomas (Member # 7122) on :

I think IV IG is made from pooled human sera. So you may wish the consider how adequate the screening is for infectious diseases of that product.

Babesia- have you had any tests or symptoms?

How long were you on rifampin and any improvement with it?

Posted by johnlyme1 (Member # 7343) on :

I agree with one other has said - find out all the co-infections that you might have -

The glut/c infusions are very good but if you can't get your bug load down they don't last long - I try to get tow infusions a month - they started to really make a difference after my olad started to go down - I also had b-vitimins in mine - My doc is still just trying to kill off the co-infections - of course the abx also get at the lyme. I had a metamaytix full personal test done - expensive but it showed some majo issues with enyzmes - Vitamin low in a, e, carotine, co-q10 - nuro transmitters - and so on - My LLMD is making sure all of this is also addressed with some of the best suppliments one can get - as an example my coQ10 was so low that I now take 600mg a day - this is 10x as much what the normal person would take - but it has been working.

Posted by lisag (Member # 6798) on :

Hi All:

Thanks for the kind responses and suggestions.

I tested negative for babs and bart, positive for Bb and erlich. I have had some babs symptoms night sweats, chills, all over body pain

...but the clincher in perhaps pursuing babs tx is the fact that my husband tested positive for babs.

LLMD's think this means there's a strong chance I have it too. They're just waiting till I settle in w/the zith b/f starting mepron since i tend to herx really badly on all new tx.

I took rifampin for about 2 months and never felt good on it...always felt like crap.

Any thoughts on adding nasal heparin to tx.

I know several others who use ivig and have had a good response...just need to figure out a way to get docs to give it a roll.

Oh yeah, I had a spectracell blood test which showed what vtis/minerals/amino acids etc i am low on...these have all been added to my protocol.

Thanks, lisa

Posted by minoucat (Member # 5175) on :

All I can tell you is that neither the hubby nor I tested positive for babs, but after many many years of LD tx we finally started really turning the corner after babs tx (then bart).

What babs testing did you do?

Have you tried artemisinin? We took that, 300 mg 2x day, and reacted so strongly to it that it confirmed the babs dx, which was also based on our babs sx.

I always think coinfections when I hear someone isn't getting better.

I have no experience with heparin nasal or with IVIG.

I've also done well using the steam sauna.

Best of luck. Hang in there.

Posted by Mathias (Member # 5298) on :

I think your recent positive test for mycoplasma is probably the reason why you have had a poor response.

What abx are you on for it? What species are you infected with?

Posted by treepatrol (Member # 4117) on :

I went about 7.5 months the first time the second go around I went about a year then dramatic changes stength ,stamina,joint pain dissapeared.

You may have been infected a long time or more than one strain ,plus a coinfection.

Hang in there its hard I know.