I'm writing because i'm feeling particularly overwhelmed and hopeless today. I've just got back from my LLND where we met to discuss my treatment and where to go from here. I'd like your insight into what you would do in my shoes..I'll catch you up a bit.
I've been working with My LLND for the past 6+ months and have yielded no results. I know Lyme is unbeleivably difficult to treat with the vast majorities of species, forms and on top of all that, every single human is different and reacts differently to the bacteria as well as treatment. Unfortunately, i'm not one that has responded to the treatments that have worked well in the past my LLND's previous patients.
I was on 2 months of Zithromax / Biaxin and then went to Clayrhthromycin and Plaquenil then back to Zith and Biaxin. We decided to go back to the Zith/Biax combo since she felt we didnt give it a good chance to work as i staggered in the meds and was only on them for a short time (maybe 5 weeks on both total). I've recently seen her again and she is surprised to see that i have not responded one way or another to the meds. She took a cd57 (was 128 where as the first one was 86) and liver tests to make sure my body was handling everything OK and that all checked out. She consulted with a colleague and provided me with a couple options.
1. Go on more ABx - Omnicef / Biaxin / Tindamax 2. Use one of the new protocols she has just received - Byron White Formula
Of course i always have the option to pursue other avenues but i'm completely lost and frustrated with the process and where i'm at. I continue to feel worse and worse each day and seriously feel that i need to find progress soon or else there will come a day...maybe not in a month or even a year...but 2 years..5...even 10 years from now where i am so completely out of it that there is no hope in even finding something that resembles a normal life. I must put forth my most aggressive efforts to find some releif now, while i still can...
I want to first get your opinions on those two protocols above, not as a doctor of course, but as someone who has seen many sufferers come and go. I'm beginning to think i dont have lyme but another inflammatory....something. SO many things....so many possibilities.....it's mind boggling and overwhelming. I'm sorry again to vent, but part of me still hasnt truly beleived that i even HAVE lyme, as treatment has not proven anything. My LLND is a wonderful person and i beleive she is a fine doctor and true student and she cares immensely. I do not question her judgement or care. I am just looking for some insight as to what you would do if you were in my shoes, or what you have seen others do. Noone around me knows what i'm dealing with and i have to make the decision for myself...just looking for support.
Also, I was recommended here in the forums to vis a doc in Boston as he is an LLMD Neuro Opthomolagist who also studies inflammatory disease. Someone PM'd me his info when i posted about Polynopsia (the visual trails I have that continue to get worse daily). He sounds very interesting and right up my alley so i wondered if you had any knowledge of him. My LLND encouraged a visit as it could only help provide more clues...
Sorry for the rant, i'm sure you'll say don't be sorry. If anything, thanks for providing the sounding board for me to vent...feels good to journal and express my thoughts...
thank you and of course I hope all is well with you..
peace and light
Posted by lululymemom (Member # 26405) on :
Zith and Biaxin? Why would she put you on two macrolides? They only address the intracellular form of BB.. I wonder about the rationale that went into that decision.
Your option 1 would make more sense. You can also include the Byron White formulas as long as you take them 3 hours away from abx. Vision issues could be attributed to bartonella, so the A-Bart would be an option.
Posted by little_olive (Member # 28063) on :
My LLMD supports the use to the Byron White herbs, too. He works with other LLMDs who have mentioned their usefulness, and on here I've heard nothing but good things.
But.
There was just an article posted that said Tindamax was one of the only antibiotics (Flagyl being a close second, I think) which got rid of up to 90% of BOTH the cyst AND spirochete forms of Lyme...! Your previous antibiotics have only treated one form. If you were going to go on that, I'd say you have as good a chance as any of killing some bugs! That combination looks extremely powerful.
Also, I agree with lulu, you can't neglect the coinfections. I have bartonella and it causes an outstanding amount of visual symptoms. NEGATIVE TESTS MEAN NOTHING when it comes to the coinfections.
Posted by BoxerMom (Member # 25251) on :
Option #1, for sure.
Zith/Biaxin is a strange combo. They are not usually prescribed together as they are in the same class of antibiotics. And they are not very effective used singly. They work best in combo with other classes of antibiotics.
I'm also not sure what's being ruled in/out in terms of co-infections. Zith/Mepron or Malarone would likely make you herx for Babesia. (Plaquenil treats Babs, but I've never herxed on it.)
A fluoroquinolone (Levaquin, Factive) or Rifampin would bring on a Bart herx.
Mino or Doxy or Ceftin would treat the Lyme. Tindamax or Flagyl treat the cyst form of Lyme.
I don't think you are taking enough antibiotics in the appropriate combinations. When you have a herx, you will know you have Lyme and co-infections!
I don't herx at all on only two antibiotics. I herx on a minimum of three. My current combo is Zith/Mepron/Ceftin/Diflucan. I'm treating Babesia, Lyme, Candida and Lyme cysts.
Please don't waste time with confusion and undertreating. You are right. Time is passing.
I would go for the Omnicef/Biaxin/Tindamax. That's a good Lyme combo. But you must also rule in/out the co-infections. The best way to do that is with combos that are specific to those infections.
Herbs are great, too. But as you are still wondering whether or not to continue with Lyme treatment, I would go for the antibiotics. You can always add herbs to your protocol when you know which infections you are targeting.
Hey, are you a dad now?
Posted by WhitneyS (Member # 25666) on :
Yea I agree...
FIRST- don't get stressed, your path is your path, there is no right or wrong, only educated decisions.
Second-- I agree, you don't need to pick between the two. But I also don't understand the antibiotic choices. Why even go back to the Biax,Zithro? There are so many abx, pick new ones that hit different forms of abx and a Co that you think you might have too. Make sure you are layering in Flagyl too.
Posted by little_olive (Member # 28063) on :
phort's first option is Omnicef / Biaxin / Tindamax
Tindamax is Flagy's better cousin, they're almost the same thing.
Posted by MichaelTampa (Member # 24868) on :
As others have said, you need to work on the abx choices.
What are you doing for parasite treatment and biofilm? If the answer is "nothing", that is another big question to address.
Buy why not abx and herbs together. If you're herxing really bad on just abx or just herbs, then I can see sticking to just the one type of treatment, but for those open to both abx and herbs, I feel together is better, for the same reason different abx are used at the same time--the more you throw at them, the harder it is for them to survive.
Posted by phorts (Member # 28909) on :
THanks for all the quick replies and insight.
I made a mistake i think as i was on Zith and BACTRIM and not Biaxin. I was on the Biaxin with the Plaquenil (I said Clarythromycin and Biaxin above which are the same...yeah..Lyme Moment?)
We started the Zith/Bactrim because my LLND suspected Bart since my symptoms are very heavily neuro. We went to the Biaxin/Plaquenil because she thought we were getting nowhere with the first combo. After getting nowhere again, she wanted to return to the Zith/Bactrim since she thought i didnt give it a good chance to work.
Now, after 6 months of ABX, supps and what nots, i'm continually getting worse.
No, i am not taking anything else. The only other stuff i WAS taking was
Probiotics (VSL3 - was and still taking 1 a day) Fish Oil Alpha Lipoic Acid Magnesium Liquid some other stuff i'm sure i'm forgetting.
SO nothing for biofilm or detox or binders or any of the million other things that people talk abot in here and around the net when treating for lyme.
Ever feel like you just want House to diagnose you and fix you? I'd give anything.
There are SO many protocols, ABx, supps and other stuff out there that i could spend my entire life researching as if i were bcoming a doctor and not know and understand it all. I just want someone to test my entire body for everything and TELL me what to do to fix it and will do ANYTHING.
anything.
I've scheduled an appt with the neuro optho that is LL and also treats inflammatory diseases. In the meantime i think i'm going to order the Abx and start on those...
At one point i did go through the EXTREMELY Tedious and red-tape filled process of getting Cholestiromine prescribed by Dr Shoemaker. $250 later and my throat swelled up like a balloon after 2 days of use.
I've researched and found that Cholestiromine actually agitates lyme and that Cholerra(sp?) is actually a better and more natural binder.
It's too much..it's just too much to try to comprehend. All with a funked up brain..lol
Ok, rant over. Thanks for the help.
Posted by erikjh1972 (Member # 20964) on :
how long were you on the meds??? i did tetra for 4 months before i noticed any improvement, same for biaxin/plaq. sometimes it takes awile.
Posted by phorts (Member # 28909) on :
2 months each. My LLND Said that, while it takes longer to realize the full benefit of the ABx, you will almost always see a response from treatment before 2 months is up. Meaning, you'll either start to get better, or more likely, get a Herx and that's how we know we're on the right track.
But, since i had no response one way or the other, we switched meds to try to go after something else.
THe first combo was for suspected Bart. The second for Lyme specific. THen back to the Bart since we were getting nowhere...and now she wants to go full force Lyme and attack all forms(this after consulting with a colleague on my case).
So, i'm investigating my options and still unsure. SHould i get tested for heavy metal toxicity?
Posted by glm1111 (Member # 16556) on :
It's very frustrating to see in post after post that these LLMDs (LLNDs) are not treating for parasites.
In a recent conference Dr.K. mentions that PARASITES should be the FIRST line of treatment and LYME secondasry.
He believes that the parasites are carrying the bacteris, viruses, mercury, yeast and fungus in their coats. From my own personal experience, I did not begin to make any progress until I went after the parasites.
This was after 4 yrs of abx incl. 6 mos of IV rocephin. I figured this out on my own from info I gleaned here at lymenet, and some very informative posts from GiGi and www.lymephotos.com
I really wish more docs were more aware of this so Lyme patients could heal.