CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I need some help -- is it possible that none of my Lyme and co respond to treatment at all anymore, or am I so neurotoxic that I can't tell what is what?
I am concerned because nothing seems to make me feel better in a way that lasts. All my symptoms are CNS. I will start something new, feel like I am making headway, and then that headway will stop, while still on that same med. I have treated aggressively (Lyme, babesia -- which I have no symptoms of -- and bart/BLO) and the meds don't really seem to do much, but the symptoms are still there. I think I have this BLO thing but even that doesnt make sense because most people with that seem to get a relief of the symptoms while treating, even though they may relapse off the meds.
I don't even get a relief of the symptoms.
LLMD says massive inflammation of certain parts of brain....says I need HBOT to help heal.
Is it possible that treating so aggresively has made brain inflammation the main problem? (But that wouldn't account for the jaw/back/foot pain and tachycardia).
I guess I am just afraid that I am a nonresponder and there are no other options?
Or could I have stalled out because of KPU...?
Posts: 3528 | From US | Registered: Apr 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I feel this way too. I will start something and the first couple of months I will start to feel better, then I stall out.
Don't know what the cause is. Seems like there are lots of people in the same boat though.
One idea is that its just too many chemicals in the body to know exactly how I actually feel. Or too many toxins, that may take years to rid the body of.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I am sure hubby can relate. For him it seems like whatever he takes for bart or whatever the mystery pathogen is seems to help him with symptoms for a couple of weeks and then he can feel that it is losing effectiveness.
We have an LLMD appointment 3/2 and have been trying to figure out something else to suggest to the doc. Seems like we are running out of things to try.
Most recently the doc surprised us by suggesting hubby increase Rifampin from 600 mg to 900 mg daily -- surprisingly this caused a fever and lots of changes in bloodwork. Continued at that dose for 2 weeks and then backed off to 600 mg. Just increased back to 900 mg -- no fever this time, but one major change in symptoms. Hubby has stopped having his nightly waking up spells with tremors and dry heaves.
Very curious as to what his next bloodwork will show -- am hoping it shows less dstruction of red blood cells.
The one other change I made around the same time is I put hubby on tincture of eleuthero -- Herb Pharm brand as suggested by Buhner. Hubby is no where near dose yet -- just at 2 droppers 3 times per day (suggested dose is 5 droppers 3 times per day).
Something seems to have changed -- not sure if it is the Rifampin or the Eleuthero or the combo. Hubby remains on Minocycline and low dose Clindamycin pulsed with low dose Zithromax.
I also think the Stephania tincture is helping his brain. Hubby increased that from 3 droppers 3 times per day to 4 droppers 3 times per day and also got a fever from that. Still plan to increase that to 5 droppers 3 times per day and continue on that for a couple of months.
Hubby has basically been treating bart for a full 2 years now. For him I feel this is the key infection. Just wish I knew how to totally wipe it out. Do feel we have made headway as the longer he treats the higher doses of meds he can tolerate.
Have you tried either cryptolepis or stephania tinctures? Hubby would definitely say that both of those cross the blood brain barrier and lessen brain inflammation.
Hubby just decreased his Cortef again -- now down to 5 mg per day from a high of 30 mg a year ago. That is another possibility that might help you.
We will probably be dropping the clindamycin as that med has been disappointing this go round. Helped greatly when treating babesia in the past though.
If I was you I would try some other alternatives -- meds or herbs for bart.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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massman
Unregistered
posted
Have either of you worked on improving the health of your organs that detox - liver, kidneys, colon, spleen, lungs, large intestine etc ?
You may be killing the buggers, toxins come out + when you reach a certain point those organs get overloaded with toxins. >>> standstill !
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
my llmd who is kinda new but works with some oldies believes the bugs are outsmarting the abx but can't outsmart the herbs
he believes in zapping with abx when lyme is new...but after a year or so you need to switch to herbs and other alternative tx
hes an md too-not really alt doc
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
You probably need to treat for parasites/worms because they play a huge role in Lyme disease. Don't ignore this.
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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massman
Unregistered
posted
Now Gael, c'mon.
This place is about killing bugs, not much else.
Dr. K gets bashed for being "scientific" and alt "non-scientific" at the same time.
And here in the US, nobody thinks they could ever have parasites !
Mexico, Haiti, India ? They are "dirty enough" to have them. Everybody knows that !
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Hey massman,
I know it never occurs to most people in this country (present company excluded) that the vegetables and fruits that we eat are grown in manure which can contain parasitic eggs.
Our animals are dewormed (is that before or after they lick our faces after they lick their behinds(sorry for being gross folks)
I can't understand either why the LLMDs are ignoring the discovery by Burgdorfer of Adult Filarial Worms found in the ticks and are just focusing, like you said on bacteria?
And last but not least, a lot of the food servers from "third world countries" are our food servers and a lot of our food is being sent to us from other countries. No offense meant at all, just a fact.
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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massman
Unregistered
posted
Well, fantasy is more fun than fact, usually.
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
hey CD,
I'm so sorry, I know you have tried just about everything.
You and I have had somewhat similar patterns. Recently, my LLMD said, OK, its time for us to completely switch abx classes, every 2-3 months.
Just got blood work done and for first time in a long time, my immune cell counts are all normal (at the moment I am on ketek)
HBOT has helped some people, and unlike a lot of other alternative therapies, one of the HBOT places actually did a small study to show it significantly helped a third of the patients, helped some for another third and didn't do much of anything for the last third.
I have been told though you really need to go for the individual containers, not just putting a bubble over your head.
I think WildCondor or Melanie Reber (can't remeber which one) did HBOT, and knows a lot about it....
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
CD57, I think you will find this article from the "Townsend Letter" interesting. The title of it is, "Lyme Toxins the Primary Cause of Your Symptoms!" by Dr. David Jernigan.
massman, I think you'd find this article interesting too and most likely will agree with it. Curious to get your feedback about this.
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Thanks guys for all the input.
I do wonder about the bugs outsmarting the meds....but within a few days? that does not make any sense at all.
Bea -- SO glad to hear hubby has made some progress. And yes, old LLMD would go up on higher dose Rifampin. He is taking in combo with other stuff? What does the eleuthero do?
Re worms etc....this could be why I cant get past a stone wall....but I have no gut symptoms? I dont get it. Are there any tests for parasites?
I think switching up fast and being on combos of 2-3 intracellulars at once is probably the way to go. Adding in herbs and heavy detox (what's new). I think the LLMDs are learning more about this being the way to go, which is good news.
Amanda -- Ketek is hard core. Sounds like it is working though. My LLMD won't RX it.
Posts: 3528 | From US | Registered: Apr 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Also I think toxicity MUST be an issue after treating so long so hard.
Posts: 3528 | From US | Registered: Apr 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Massman, have you considered becoming a LLMD?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
BTW I have on of those anti-neurotox tinctures by Jernigan...don't feel anything.
GWB didnt you go to his clinic?
Posts: 3528 | From US | Registered: Apr 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
O & P (Ova & Parasite) testing is very inaccurate. I was tested many times over the years and they always came up negative. I was loaded with them.
Do a search on here and humaworm for parasite symptoms and antiparasitics.
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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massman
Unregistered
posted
seekhelp - almost 30 years I deliberately chose not to be an MD.
posted
Hi CD 57, Ketek worked REALLY well for me. Actually so well that I was off all Lyme meds for a year. Hang in there and get bloodwork done to protect your liver. I've been battling this since 2001. Most recent bout started May of 2009. Ketek DIDN't come through for me and I was put on Tindemax. That was AWFUL and I stopped it after a month. Anyone have any similar issues? I am ready to just give up! MD wants me to go back to IV although I didn't get much relief after 6 months in '05. I truly just want to stop treatment and try to live as best I can. Help, please?! Thanks
Posts: 5 | From CT | Registered: Jan 2010
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