feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I have been treating for one year now. All monotherapy. Yes, I see an ILADS physician.
My tx IV Rocephin Zithromax Cipro Doxy
Feelfit Posts: 3975 | From usa | Registered: Aug 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Are you any better?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
barely
Posts: 3975 | From usa | Registered: Aug 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I too want to hear the answer. I did this for 3 months. I finally conceded to myself that I have no chance with monotherapy (unless maybe IV).
Unless the cases on Lymenet are completely not the norm, experience indicates it won't work. I'm scared to death to take the quantities of Abx that some on this forum do (3-5 types at once).
I sure wish it would be successful, but I'm being realistic.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Absolutely not. The closest I came was Tetracycline. But even that only gave me about 20% over the long run.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Feelfit,
I can totally understand your frustration. Maybe you could talk to your doctor and have them change things up a bit. Ask for combo therapy! It cant hurt to try for a month or two.
Recently, I said the same thing to my doctor, because she felt I didnt show any signs of coinfections, did not test positive for any (3 times), and didnt need to be overloaded with abx.
I feel like my last few symptoms could be bart related. I get really bad soreness in my neck alot, which is my biggest complaint right now with other symptoms such as heel foot pain on/off, vision difficulties, and sore lymph nodes under my arms which are all on/off.
So I insisted that I may have bart symptoms and she then put me this month on rifampin and TOA Prima Una de Gato. (cats claw)
She also said my immune system has to improve because without that your body cant fight off the lyme by itself.
You may not be improving because of alot of other factors besides the lyme or co's like viruses, metals, mold, parasites, immune system not being boosted, biofilms or things of this nature.
Lots of threads have been posted here about abx not working or treatment results which have plateaued.
I have been on monotherapy for 7 months and I have almost recovered to 90-95%.
May I suggest you list of ALL your symptoms and discuss with your doctor and at the next visit say, "lets compare where I was in the beginning to now." It also helps LLMD's to determine what symptoms could be co related.
I did this and it seemed to help sway her decision to try the combo therapy. Some doctors may be fearful of being sued.
So far I have been on doxy, biaxin, zithro, and now rifampin with cat's claw.
I am also petrified that if I end therapy in a few months I will relapse because I havent been treating with combo therapy.
Most doctors recommend combo, but if the therapy is working and you truly feel better since the beginning, than thats whats important.
Monotherapy does leave me with doubts about it being thorough, even though I feel I am in the home stretch.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Well my concern about using one abx for lyme tx is that it will only hit the targeted form of Bb.
Example: Doxy hits the spirokete...this leaves all of the othe forms unattended to do as they will.
Shouldn't lyme tx at least hit all forms at once barring the tx of any co-infections?
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
I have read that people that are bombarded with abx to hit everything at once do not progress as well as targeting each thing slowly.
I agree with you totally about certain forms of lyme.
I discussed biofilms with my LLMD and she gave me Bromelain (by Pure)which is an enzyme supposedly that will help to get rid of them. That is just her opinion tho.
There is Virastop and Mucostop that claims they it can do the same things.
I see posts here that swear by other causes such as the "Trans Factor".
Truthfully, I dont think there is any one thing that can eradicate all of lyme and its forms. Its a bunch a factors.
That is why you see posts on here discussing all those remedies which attack the other forms that lyme uses to hide out in our body.
Everything seems to be trial and error at this point as the doctors dont even have the answers.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi FeelFit--
I want to make sure what you are saying I understand clearly --
You have take the meds you listed - But Just ONE at a time-
Like 2 weeks of Doxi and nothing else ??
From personal experience and from what I have seen here and read other places-
Taking Only One med at a time is NOT Effective- and is counter productive - causes resistance build up -
One med-(Doxi) may help a Newly infected person (weeks) but Not someone who has been sick for awhile --
Make sure what co infections also--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
You should get better! Look at this fresh article
tinyurl.com/6k5s4u
3 g of amoxy for 3 months and people are better
Why we don't see these guys here on this board?
Posts: 54 | From Canada | Registered: Feb 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Probably because if they didn't have health issues, they wouldn't spend time purusing these Internet forums trying to get better. They'd spend more time living. I sure would!! BUT, I'd be happy to help those who helped me get better too.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Sorry to hear that this is so hard for you. It may be helpful to line up your treatment with these outlines. They are very good tools. Monotherapy is not suggested by any of them.
I know you are seeing an ILADS LLMD and there may be reasons (i.e. liver safety) for using one drug at a time. Still, you have reasons for questioning if this is enough.
I wonder what your doctor is doing for the cyst form and to melt biofilms? Have you asked him about his philosophy and what he thinks about where you are with all this? It is important to have this conversation. He may have reasons and you have a right to hear those - or venture elsewhere if you are not comfortable.
Aside from abx, have you been able to try a gluten-free diet? Gluten can cause many symptoms beyond the gut. Some feel so much better avoiding it.
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I have discussed this. My doc feels that his patients are not able to tolerate, for the most part, more than one abx at a time.
Otherwise the herxes are too bad.
Yes Jay, I have used just Doxy at 300 mg for over 3 months. Or just 1.2 mu bicillin (which I forgot to list)per week for 3 months....and on and on.
I do have awful herxes. but I don't feel any better either.
So I was just wondering.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Feelfit, I can attest after a week that two Abx hit harder than one. Zith didn't do much after the beginning. I stayed mono on for 2 months (would've been more if I didn'r press hard).
Now, Zith with Plaqunil may have been a different story as something was happening. The pain (burning) was too much. The LLMD suspected allergic reaction and said stop. Now that I think about it, I suspect it was killing more and I couldn't take it.
I never took Bicillin, but it sounds like you may have been undertreated with that. Aren't others saying they do it 2-3 x a week? I recall several threads.
Life's only so long. I want to be the one who says I can';t handle it after I tried. If that's the case so be it. If i could get better sooner, that's ultimately most important. The patient's circumstances should be most important unless there is true medical danger in a treatment.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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