posted
It has been a couple of months since I have posted an update on hubby. Good news for a change.
He has been on IV Rocephin for 3 months now. Knew from the first dose in the hospital that it would be helpful. Then he finished up 4 rounds of Coartem before switching the oral Zithromax to IV - had never taken that med IV before.
He has been on IV Zithromax for 1 month now. This is actually the first time in the 10 years he has been sick that he has been on 2 IV meds at the same time. He had a mild herx when he added the Zith - ran a fever for a couple of days and just generally felt lousy.
He started back on tindamax and gradually increased the dose - is now at 250 mg 3 times per day. Takes it 6 days on and 3 days off.
He is also on oral Factive 5 days per week - has been on that med for 6 months now.
Steve stopped the Topamax seizure med he started back in July when he crashed. He added in low dose lithium - hasn't really noticed anything from that.
The bottom line is that he is sleeping thru the nights for the first time in 10 years without waking up with tremors and dry heaves - so no more IV Phenergan. His neuro symptoms are almost totally gone - no tremors, no myoclonus and no dystonia. Headaches and dizziness are improved but not gone. Fatigue continues to be a major problem and some overall body aches. But overall he feels the best he has in 10 years.
Steve has an LLMD appointment this week. The big question is do we just continue on the current meds or get more aggressive with treatment?
I am giving Steve a break from herbs - has been off most of them for 2 or 3 weeks.
His neuro LLMD had said to do the IV Zith for 2 months and didn't really give us any indication as to where to go from there.
We are still waiting to get his repeat SPECT scan - naturally insurance denied it the first time and it is being appealed. Hopefully can get this test done in November.
CD57 was 70 in early September after 1 month on Rocephin - had been 44 a year ago.
I was thinking of waiting another month before changing anything and then repeating the Clongen bloodslide in early December - will be 6 months from last bloodslide.
The only other change the neuro suggested was to add in low dose naltrexone which we have not done yet.
So how about it - please give me your input - stay the course for now or get more aggressive?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Bea, I'm so happy to hear Steve is finally feeling better. I would stay the course for now. You know it's working.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Bea, LDN is ok but please start on very low dose and best is a cream. I needed six weeks to get to 3 mg and now will try 4.5. It is a good medication for longterm.So happy he is doing better.Karen
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seekhelp
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I'm thrilled to hear he's made some nice improvement!!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sammy
Frequent Contributor (5K+ posts)
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Wow Bea, this is great news! I too would stick with this med protocol as long as he continues to make improvements.
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TerryK
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Member # 8552
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Great news! I agree with feelfit, stay the course then ramp up when hitting plateau.
I was sleeping better than I had in years when I started naltrexone. That started sleep issues that lasted for many months after I stopped.
There was a presentation at the ILADS conference that talked about using some researched nutrionals products that have been shown to increase cd57 significantly. lymeplus and immuneplus increased 159%
Posts: 6286 | From Oregon | Registered: Jan 2006
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
So Steve is on: IV Zith + IV Rocephin, Factive and Tindimax.
Bea, this is GREAT. How did you talk the docs into finally doing IVs?
Interesting that these meds are traditionally Lyme and bart meds?
Posts: 3528 | From US | Registered: Apr 2007
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Sammi
Frequent Contributor (1K+ posts)
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It sounds like you have found a protocol that works well for Steve. This is great!
I agree with the others, stay with this since it is working and giving him some relief.
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posted
CD57 -- How did Steve get docs to prescribe IV - I insisted that the PCP try some IV antibiotics the last time he crashed and was in the hospital for a week in July. The doc called up our LLMD who we had already talked to about this possibility and they agreed to try the IV Rocephin.
Since it was so helpful the PCP has continued prescribing it.
And then I took Steve to a LLMD neurologist -- he hadn't been to a neurologist in about 3 years. That doc added in the IV zith.
And we continued with the factive and tindamax prescribed by his regular LLMD.
It helps to have multiple docs sometimes!!!! But the neuro may or may not be moving to California and the PCP is getting reluctant to continue the Rocephin and this appointment is the first time the regular LLMD will find out about the IV zith. So for now it is working -- but getting the scrips going forward may prove more difficult.
Steve already had the PICC line -- has had that for 7 years unfortunately. And his insurance is ok as long as I administer the antibiotics and home health care is not involved.
I definitely think that prior treatment for bart and babesia in the past made it much easier for hubby to tolerate multiple IV's. When he first did IV Rocephin 7 years ago I had to stop almost every single IV 1 or 2 times to administer IV Ativan for seizure-like episodes. This time the IV's do sometimes trigger minor tremors or myoclonus very briefly but it doesn't last very long.
I am somewhat reluctant to add in or switch to more powerful newer IV meds -- plus of course cost would be an issue. Both IV Rocephin and IV Zithromax are generic and pretty cheap.
Personally Steve and I would prefer to take things slow and not upset the applecart at this point. But we both know that probably something new and different will need to be done at some point to really knock out these infections.
I ran out of wobenzyme a couple of weeks ago and am curious as to how Steve will react when we add that back -- it is on order. He has continued with 1 or 2 lumbrokinase daily but he had also been taking 4 wobenzyme daily.
If the doc is reluctant to continue the factive then we will push to add back rifampin. One of the reasons we want to repeat the bloodslide is to make sure the coccobacilli is not coming back unawares.
Steve had been on oral zith off and on at either 300 or 600 mg for the last year and a half -- would definitely agree with the docs who say this med works differently IV than it does orally.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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