posted
Any insights to this problem would be appreciated.
My wife has been a tick borne disease victim for approximately 7 1/2 years now. She has been disabled and unable to work for all those years.
She has been exposed to Babesiosis, Bartonella/BLO, Mycoplasma fermentans, Lyme, and perhaps more from a single tick bite.
She tests positive for herpes simplex cold sore virus.
Over the years she has had many, many courses of short and long term oral and iv. antibiotics.
We have a well qualified, out of state, LLMD at our disposal.
We have access to our own Rife machine.
She has recently been treated with Malorone, Zithromax, Artemesinin, Rifampin, Minocycline, Flaygl, nystatin, samento, HH herb, vitamin D, B vitamins, fish oil, and many other supplements. In the past she has responded very positively to Levaquin.
She has had iv. Rocephin, iv. Doxcycline, i.v. Claforan, and has always improved for a short time then relapsed.
We have even done hospital grade hyperbaric treatments for 30 days.
She has hade her mercury fillings removed.
At the moment the Babesia like symptoms have responded very well to therapy, but it is still there.
The electrical storm type headaches do not diminish with anti-babesia therapy so I suspect that babesia is not the root cause of this particular symptom.
It is very difficult to peg the electrical storm headaches to which disease.
During the summer we went on vacation, and although she was still sick, she was much improved and we had hope again.
There is a sense of doom in the house now.
Thank you.
Posts: 45 | From upstate NY | Registered: Sep 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Hi,
I hope I can add some insight here. I was on 4 yrs of antibiotics including 6 mos of IV rocephin. I didn't make any significan progress until I started treating for parasites and worms which play a MAJOR role in Lyme disease.
This is EXACTLY what came pouring out of me when I started treating with antiparasitics. Willy Burgdorfer found adult Filarial Worms in the ticks when he firat dissected them.
This seems to be one of the co-infections that has been ignored. You can also get more info on here by typing parasites and Lyme into the search bar at the top.
Sorry, your wife is having such a hard time,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by lymecaregiverNY:
She has recently been treated with Malorone, Zithromax, Artemesinin, Rifampin, Minocycline, Flaygl, nystatin, samento, HH herb, vitamin D, B vitamins, fish oil, and many other supplements. In the past she has responded very positively to Levaquin.
How long has she been doing which meds?
If she's responding to Babs therapy, but still has Sx, it could still be possible that the headaches are Babs-related, No?
What is she on right now?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
FWIW- The stress of trying to have a "fun" family vacation and not drag everyone else down usually sends me into relapse.
I pretend I'm fine & try to do more than I should. My husband usually thinks I'm "all better", but I'm not.
He's always baffled when I'm suddenly in full-blown relapse.
I feel awful about the sacrifices my family makes & want desperately to make up for it whenever I get the slightest bit of strength.
I continually overdo it & DOWN I go again.
Maybe someday I'll learn.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Does she take any meds besides ABX, like SSRIs or SNRIs?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
If I had to guess at which infection is holding up progress my guess would be bartonella/BLO/mycoplasma.
The facts that Levaquin was very helpful and that she goes downhill after stopping IV Rocephin both point to bart etc.
Hubby has just started pulsing Factive (same class as Levaquin but newer med) and Tindamax. The Factive has been helpful, but the jury is still out on the Tindamax.
Hubby also did well on very high doses of the herbal tincture cryptolepis. He also takes HH-2 but that doesn't seem as helpful, but his dose may be too low.
Don't see anything for hypercoagulation on your list -- lumbrokinase or digestive enzymes such as Wobenzyme or Vitalzym or heparin etc.
Antiviral meds might be worth a try as well.
Another possible med to consider which might be helpful would be Bactrim -- supposedly will help with both babs and bart.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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