The short version is that I have been taking various abx combos and antimalarial meds for 4 � yrs, the last 9 monhts on IVs. I was sick for about 2 yrs before starting treatment.
Though my immune cell markers are a little better, I have slowly gotten more tired, more pain, more symptoms. If I back off the Larium, even for a week, my redblood cells tank, which brings down my whole immune system (mepron, malarone, plaqunil, various artemesian derivatives stopped working after 26 months, only insanely high doses of Larium knock it down, been on that drug for 14 months).
If I back off of abx, it takes 4 days for the really nasty symptoms to return. Do detox, done parasite protocols, homeopathy, cowden, various other herbs. Alternative treatments don�t seem to help me, only the hard core stuff, and it seems like it is only slowing down the degradation of disease
I see one of the best LLMDs in the US and he told me he doesn�t know what to do (He is 3rd LLMD that�s treated me). To be honest I feel like throwing in the towel and F*** it, just putting myself to sleep. Why should I just continue to suffer? Don�t have family to help, and as I get worse, it is more and more difficult to do basic tasks.
What do those of you who have been sick a while and tried almost everything do?
Posted by CD57 (Member # 11749) on :
I'm in same boat Amanda. I just posted the same.
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by Amanda: What do those of you who have been sick a while and tried almost everything do?
I went to Germany for Bionic 880 treatment and got better. I didn't want to keep on the merry-go-round of ups and downs of abx, which I felt I would be on forever.
Posted by Amanda (Member # 14107) on :
6
is there any treatment like this in US? Money is a huge problem for me (like it is for most sick people)
Posted by seibertneurolyme (Member # 6416) on :
If the larium helps then the obvious answer is that you are dealing with babesia and/or other bloodborne parasites. But larium by itself is not nearly enough to get rid of some of these infections.
You said that mepron, malarone, art etc stopped working. Did you ever try any of those with the larium? You need to be taking multiple meds that work in different ways.
I will come back tomorrow and post more on the combo of meds that hubby is on. We consulted a couple of docs and got different scrips from each and then made up our own protocol. I am hoping his new doc that he sees in another week will continue with the current plan and can fine tune it a little.
The obvious first place to start if you have not tried it would be IV clindamycin and quinine. Yes, it has side effects, but in my opinion it is one of the strongest combos. And then you can add malarone to that and artemesinin and IV flagyl. That was hubby's first combo.
He had to stop when he killed off too many red blood cells and brought out rocky mountain spotted fever he didn't even know he had. He is still running daily fevers from that 2 1/2 months later. He also got bacteremia from serratia marcescens which seems to finally be gone we think. Also think that bacteria was hiding out but no way to know for sure.
You don't list bactrim, alinia, coartem or daraprim. Those are all other possibilities to add to the mix.
Will be back tomorrow to post hubby's combo number 2 that he is currently on.
Don't give up. I think you can still beat this with a strong enough med combo.
Bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
Amanda,
Here are 2 links to read that may give you some more ideas for med combos.
Bea Seibert
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by Amanda: 6
is there any treatment like this in US? Money is a huge problem for me (like it is for most sick people)
Check out 17 Hens Bionic thread. We talk about the other options on it. There is a PE1 that some have used instead.
Posted by glm1111 (Member # 16556) on :
Look into treating for parasites. They play a huge role in Lyme disease and are often overlooked even by the best LLMDs. After 4 yrs of abx and 2 yrs of IVIG,
I started antiparasitic herbs and salt/c. Both VERY inexpensive protocols and they saved my life.I had the Filarial Worm co-infection which went undiagnosed.
Do a search on here under parasites and check out lymestrategies for people doing salt/c and other therapies both allopathic and alternative.
Gael
Posted by Amanda (Member # 14107) on :
thnks everyone, I really appeciate your ideas. I felt like I was running out of them. To make things clearer, let me add
1. Did humaworm, then parastoy, and now finishing up the 6 week Klinhardt biltricide/ivermectin P&P/albenza/alinia etc. Didn't seem to do anything.
2. Alwasy have taken Larium with something else (like malarone, coartem, alinia, plaquinil, flagyl etc). None of the other things made any difference. Have not done IV clinda and quinine, so maybe a good idea to talk to doc about that now. Also have not tried bactrim, another thing to try
Posted by Amanda (Member # 14107) on :
any other thoughts you might have, would love to read them.
Posted by CD57 (Member # 11749) on :
I think Bea will have a lot to contribute here. I have seen your doc also, and I have to say he/they are very responsive to suggestions/things to try. I think you need to hit whatever it is (what does he think it is? babs?) really hard with the big guns like IV clinda/mepron/malarone/quinine/larium/coartem/flagyl. He will do it. Sometimes I have found that office needs you to bring in your own suggestions, they simply get too bogged down to think clearly.
Posted by Amanda (Member # 14107) on :
last visit with LLMD, they said, "I fell like I am flying blind here". Which, I give them credit for having the humilty to admit they didn't know what to do, but its kinda scary when one of the best LLMDs in country says they don't know what to do.
I'll see what Bea says, nd think out a plan from there. Also thinking of seeing another LLMD in additin to current one to get more eyes on this...
God, where am I going to get the money for all this? Also getting help is a problem. I only have one friend well enough to drive me 6 hours every 2 months just ot see current LLMD...
Posted by Amanda (Member # 14107) on :
also will add (for all you smarties out there)
tried primaqine with larium for 5 months, did absolutely nothing.
The larium and the coartem seem to knock it down, but they only seem to suppress it. The coartems effect starts to wear off after 1 week. Same with Larium.
Though my RBC counts get low, and the RBC get large, my heamaglobin is never low. Maybe this is because of LArium...
When I first started out treating this 4 years ago, I had no abnormal RBc lab results (I had bad hot flashes at night though). We started with mepron and zith and pulsing art. Made a little progress, and interestingly, my CD 57 scores jumped up. Then after 7 months, it stopped working, so we doubled the mepron dose. Tried that for another year and then it stopped working, so we upped mepron dose again, that knocked it down for a few months, then mepon stopped working alltogher so we switched to larium.
I herxing like hell on Larium and after 3 months, things went really well. Then started backsliding so we added malarone and other various combos mentioned above in my post
In the last 6 months I have started having problems with low platlet counts. Which worries me because I feel like the bugs are getting stronger over time
Posted by Tincup (Member # 5829) on :
Hey hey Amanda...
Sorry you are so sucky. How's that for a greeting?
I just posted a couple of thoughts on CD57's post that you might consider. Also thought of another one for your situation, and maybe even CD's too?
When all else fails, just doxycycline. It has brought me back from near dead in the past, for whatever reason. And it didn't take long and it didn't take much of it.
Contrary to the IDSA reports, it isn't a cure, but it can help some folks get on solid ground and then feel well enough for a time to allow them to think and move forward.
It's cheap and not too hard to get.
Please check CD's post for the other suggestions. Another storm popping up, gotta run.
Take care of you!
Posted by RC1 (Member # 31923) on :
Have you read "Survivng Mold" it's Dr. Richie Shoemakers book. There is a lot of information in there about mold illness presenting itself in the same way that Lyme does.
He thinks that a there a number of people that being treated for Lyme and co's when they actually have mold illness, instead or also.
Just a suggestion, I learned a lot about Lyme from that book too. I'm probably way off base with this, just brainstorming.
Posted by hadlyme (Member # 6364) on :
Here's something to try that my LLMD is having us do. It doesn't cost anything extra.
Low fat to no fat in your diet.
What have you got to lose. People are getting better on this diet and no drugs even.
Look up the McDougall diet.. it's a veggie one.. (I eat a bit of lean beef and chicken)
It can't hurt with everything you've been through.
People have herx'd on this diet, so be prepared for that too.
It's controversal, yes, but since you're ready to give up, why not try eating.
According to his studies, fat 'helps' feed the biofilm around the little buggers. Take fat out of our diet and 'it' can't live.
Not expecting everyone to believe or do this.. but it really is working for us that see this llmd.
Posted by glm1111 (Member # 16556) on :
Amanda,
Just so you know, short term doses of antiparasitics are not enough, whether you take the pharmas or the herbs.
I took 16 caps a day of strong antiparasitic herbs for 6 mos and then 2 days after I started salt/c is when they finally let go.
I think Dr. K. has his pts on the pharma drugs for about 4-5 mos if not longer. It takes a LOT to get rid of these parasites, so please don't give up on this.
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