posted
Well, call me Ms. Guinea Pig! I'm now in my 6th month of daily IVs and still sick. One old Statement of Disability by my doctor in 2001 reported "more than 100" therapies and meds had been tried on me with no success.
The good news is that my t cell count is slowly rising. My LLMD says that tells him I'm improving. But I'm still in bed most of the time despite my efforts to move more. I sweat, tremble, pant and get dizzy when I do laundry! I laugh when I remember my mom complaining that I "always walk too fast!" If she saw me now she'd cry.
Do I need to keep going on my Rocephan Zithromax regimen?
And before you ask, we are mostly gluten free, no dairy, sugar, processed, etc. I tried juicing but got sick from it.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I'm not expert, still a newbie to IV abx, but if it is helping you, and you can still afford it, keep doing it.
Haha! Yes, my mom used to say that about me too.
Now she holds me up so I can rest.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Good to hear from you again.
Up for comment-
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
Thanks 2roads. I've been hibernating while waiting for my computer to be fixed. Now I have tablet so can stay more connected. Hope all of you are improving with time. Anybody back to "normal"?...if I can remember what that means. Ha ha.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
I'm on month 15 of rocephin IV 4gms. Treading water.
posted
Same here... I did 13 months IV Rocephin then 3 months IV Doxy. Thru that time I was always on multiple other oral Rx targeting cysts, and either bart or babs(but I never mixed rif and mepron at same time).
If you are not also hitting co's and other parasites (ie with salt/C, alinia and other Rx) then IV may not work alone.
It took maybe nine month of IV before I started seeing some improvements, especially with joint pain and stiffness, and I'm still struggling with neuro issues (but now making progress).
Hang in there a while longer if you can afford it, and ask your LLMD to ramp up fighting co's and see about cyst busters (Tindamax or Flagyl) if you are strong enough to tolerate.
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My son saw some improvements starting at month 3. Then slow gradual improvements. At 9 months his PICC cracked again and summer was coming so decision to pull it and see how he did. Worst decision ever. Too early! Stick with it. Maybe see if doc can switch up IV meds. Do some pulsing or rotating. I know our doc has a good plan for my son with 3 IV meds if he ever agrees to get a PICC again.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hey I just saw this study that showed chronic lyme patients had a 70% improvement in their SPECT scans if after 1-2 years of intracellular abx use.
"Treatment with antibiotics, especially those with intracellular-penetrating activity, resulted in resolution or improvement of abnormalities in 70% of patients over a 1- to 2-year period."
It was from a Dr. D study about SPECT scans showing perfusion abnormalities in chronic lyme patients.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Your symptoms while doing laundry sounds like my POTS symptoms while untreated when trying to do anything upright.
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