HealingWell
Search Close Search
☰

Stem cell/IV Antibiotics

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/7/2019 10:14 AM (GMT -5)
Well guys, I’ve sat back for a few months and I’ve tried my hardest to make my own hay-maker and I think I’ve came up with it... in 3 weeks I travel to Columbia MO to be placed on IV antibiotics and then in 6 weeks I’m scheduled to travel to Florida where I’ll have a round of stem cell therapy done..... what do y’all think?
Posted 5/7/2019 10:32 AM (GMT -5)
what clinic in Florida?
Posted 5/7/2019 10:34 AM (GMT -5)
How long do you plan on being on IV (Rocephin?). If only a month or two it may not be worth the investment. I always say that IV should be used only for the most severely ill lyme patients, or for people with zero gut tolerance for oral abx. Given that you are able to travel your condition does not sound that severe. Not to make light of your situation, I was on IV for 16 months and still only got marginal gains. Spent a small fortune.

Also if a Lyme patient sees little to no progress in there treatment regimen consider treating Babs for 5 months or so, then attack Bart regardless of any negative test results.

Can't comment on stem cells... its one of the few therapies I haven't tried.
Posted 5/7/2019 10:42 AM (GMT -5)
"I always say that IV should be used only for the most severely ill lyme patients..."

Why? I have read that IV is crucial for patients with AV block, and while I have that, my other symptoms are not very severe...
Posted 5/7/2019 11:11 AM (GMT -5)
Lol... I have pots and horrible autonomic dysfunction with neuropathy all over and I can’t stand for longer that 20 minutes without almost passing out. I don’t think I should be on my death bed to utilize one of our best resources. Why should they only be used in the worst cases? That doesn’t make sense to me. I’ve been miserable for a year, I’m bad enough that I can’t work, I can’t exercise,lie on my right side, or on my back without my hip swelling up.
Posted 5/7/2019 11:18 AM (GMT -5)
It's only my opinion on IV treatment, and everyone has different results.
Posted 5/7/2019 11:18 AM (GMT -5)
If you’re only on the IV abx for a few weeks - I doubt if that will make a difference.... or can you continue the IV abx after the stem cells?

FWIW Dr J only recommends IV abx for those who have stomach/gut issues or when critical structures are compromised.

Did you discuss IV abx with Dr J when you saw him?
Posted 5/7/2019 11:21 AM (GMT -5)

potsnpans said...
"I always say that IV should be used only for the most severely ill lyme patients..."

Why? I have read that IV is crucial for patients with AV block, and while I have that, my other symptoms are not very severe...

I would think AV block might fall under the serious category??
Posted 5/7/2019 11:24 AM (GMT -5)
Is it a LLMD you’re seeing in Columbia for the IV abx?

If not - not sure if I’d bother
Posted 5/7/2019 11:36 AM (GMT -5)
Yeah it’s an LLMD! It’s going to be for at least 3 months. I tested positive for myocardial antibodies which my doctor believes is from having Lyme carditis at some point, I failed a hearing test in my left ear which I constantly have a ringing in and last week at my autonomic nervous system specialists he told me I’ve lost the reflex ability in my left ankle... guys, I just know my quality of life is crap and if someone walked through the door with a quarter and told me heads I die tails I’m 100% better I’d flip it without and 2nd though. The traveling comment is crazy, even dying people ride in an ambulance to the hospital lol. I’m not just gonna lie here and die I’d walk my autonomic dysfunction *** a thousand miles if it would help me just a little, I’m eating right, taking all these vitamins and herbs and I’ve not seen results. 8 months of doxy, azithromicin, flagyl, and amoxicillin and I haven’t gotten a bit better.
Posted 5/7/2019 12:08 PM (GMT -5)
KOC,

Sounds like you have been treating only since last fall. What's it been 6 or 7 months? Can you shared with us your past oral ABX combo protocols, and if you have treated for co-infections yet ? I have traveled myself while on IV. It's not fun having to bring a week or so of your Rx and supplements in original manufacturer and Rx pill bottles, and tinctures, and get thru TSA inspection. I had to ship my IV Supplies and Rocephin packed in ice for next day air, and have the hotel put it in a fridge upon arrival.

I agree that sick people can travel by stretcher, ambulance and/or wheel chair. From your original post I didn't think that was your case.

You asked us what do we think of your IV and stem cell plan. There are no silver bullets in treating chronic lyme and co's,.. it's like a marathon.

Please keep us posted on your progress.
Posted 5/7/2019 12:12 PM (GMT -5)
i'm not downplaying your symptoms.... just clarifying that you're not just doing IV abx for a few weeks.

So you will stop temporarily when you do the Hyperthermia...or can you continue through that?

Also wanted to mention - what Tickbite already said - if you haven't treated Babesia...that may be why you didn't get a response from the abx.
....and apparently hyperthermia is only effective for lyme. This is what a member was told when she went to Europe for hyperthermia treatment.
So...if that is true - you may need to do something for Babesia after.

My tinnitus has gone - I believe it was Babesia treatment that fixed it.

So, please keep in mind that you may need to treat Babesia EVEN after the IV abx and hyperthermia.

"8 months of doxy, azithromicin, flagyl, and amoxicillin and I haven’t gotten a bit better."

Unfortunately - that's not a good protocol for 8 months. I didn't start to heal until I took Bartonella meds...and then Babesia meds...and now back on bart meds.

i do hope the hyperthermia and IV abx do help you...and reduces some of your symptoms.
Please let us know how it goes.
Posted 5/7/2019 12:35 PM (GMT -5)
are you going to get a port catheter put in place?
Posted 5/7/2019 1:26 PM (GMT -5)
Kentucky - when you saw DrJ was IV abx discussed?
Posted 5/7/2019 1:39 PM (GMT -5)
After my first year on the Donta protocol with very minimal progress, I changed my LLMD to someone known to treat co-infections more aggressively. I treated Babs first for 5 months like Girlie recommended to you, then switched to zith, rif, and doxy for Bart for a few months before ALT AST levels became elevated and took a break. Then started IV Rocephin with oral Zith, then added Rif back for a few months. Then rotated back to Babs protocol along with the IV. It took about 9 to 10 months on IV before improvements were noticeable, but couldn't break 50%. My last push with Bart got me to 85-90% and weaned off ABX continuing with Buhner herbs for maintenance, but relapsed soon after stopping Rx.

Most short term IV Roxcephin patients usually relapse after stopping it for reasons unknown. Some LLMDs will use oral Omnicef after IV Rocephin is stopped to improve success.
Posted 5/7/2019 8:01 PM (GMT -5)
have you considered stem cells first then antibiotics?
Posted 5/14/2019 10:47 PM (GMT -5)
Treating Lyme, I get no improvement in symptoms. The only thing that has improved my symptoms is Clarithromycin or Alinia, both for Babesia, even though I tested negative for Babesia. Turns out that’s my strongest infections, causing the most symptoms. If you’re not getting any improvement from treating Lyme, there’s a strong possibility of you having coinfection that needs to be treated.
Posted 5/15/2019 12:03 AM (GMT -5)

Inspiredby3 said...
Treating Lyme, I get no improvement in symptoms. The only thing that has improved my symptoms is Clarithromycin or Alinia, both for Babesia, even though I tested negative for Babesia. Turns out that’s my strongest infections, causing the most symptoms. If you’re not getting any improvement from treating Lyme, there’s a strong possibility of you having coinfection that needs to be treated.

Clarithromycin is a lyme antibiotic.

I agree with your statement about treating the coinfections - particularly Babesia .
Posted 5/15/2019 2:26 PM (GMT -5)
Way back when I started treatment some LLMD's claimed that Clarithromysin does work to some extent across all three B's. They usually paired it with plaquenil. But this is no longer a preferred protocol like Rifampin or Rifabutan.

I was taking Rif, biaxin,(clarithro) and alinia since last July, then just switch to Bactrim, Biaxin and doubled up Alinia.
Plan to take Girlie's advise to try a Rifabutin combo next.
Posted 5/15/2019 4:29 PM (GMT -5)

tickbite666 said...

Plan to take Girlie's advise to try a Rifabutin combo next.

Uh oh smile

I’m interested in what your experience will be - if you find it as “strong” as I do.
Posted 5/16/2019 8:02 PM (GMT -5)
Kentucky, if your going to dr cc he is amazing and will get you right I am comfident. Goodluck
✚ New Topic ✚ Reply