HealingWell
Search Close Search
☰

9 months on abx, no progress. What gives?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/27/2014 5:06 AM (GMT 0)
I'm really frustrated and confused. I've been treating lyme and bartonella for nine months with everything from doxy to clindamycin, bactrim, azythromycin, rifampin, samento and banderol, artemisia, garlic, A-bart, and many other supplements. I got my MTHFR checked out and its not bad. I detox. Im for the most part, sugar, dairy, and gluten free. I can't seem to get any better. My brain and my eyes are still terrible! My physical symptoms go away and then come back, but my nuero/brain/eye symptoms are constant.

My llmd took me off the abx a week ago to see if I was toxic from the abx, and my symptoms are flaring like crazy. My feet hurt, so I am assuming that its the bart. But I've been treating the bart for so long you'd think I would have knocked it down a little by now. And what about the lyme? Am I still battling that too?

What am I doing wrong? I just want to be better. I keep hearing stories of people seeing progress after 3 and 4 months (which is fantastic for them!). But why am I not seeing any changes?
Posted 6/27/2014 5:34 AM (GMT 0)
Hey there hun...so sorry your not seeing much improvement. Thats not fair when your trying so hard but lyme is a hard uphill battle. Everything will be okay...you just gotta find what meds fit. I noticed in your list of meds there was no cyst buster such as flagyl or tindamax? Have you incorporated any of these into your protocol yet?
Posted 6/27/2014 7:11 AM (GMT 0)
I know exactly how you feel Asada...

I have been treating Bart and Lyme together for 23 months, and I still have Bart symptoms. They are not easy to deal with. I'm taking Cumanda now for Bartonella.

I posted a thread yesterday, and I have about the same thing going on: my pains are decreasing over the last month and a half (because of Low Dose Naltrexone), but my neuro symptoms are getting worse. What are you taking for detox? I'm on Burbur for that (I feel this is the firs time something helps me detoxing), and will be adding Sarsaparilla from tomorrow on (my package is arriving today).

Be careful with Flagyl or Tindamax, if one has a very heavy bacterial load, it can get dangerous to take these drugs, that person could become too toxic because of the enormous die-off and go in shock. My dr doesn't want me to use it, still not after all those months of treatment (because my blood is still showing very severe herxes). I would only take it after discussing it with your LLMD. (I'm sorry Orchid Rain, I don't want to criticize what you wrote, I'm just explaining my own experiences).

Keep on fighting the fight.... you will get there, there are so many people on here that have been ill for such a long time, that I'm sure we will get there too.

Marie

Posted 6/27/2014 7:43 AM (GMT 0)
MarieLS, No need for apology, everyone is entitiled to their opinions. Different strokes, diff folks! I was sharing from MY OWN experience as well.

I just know that when lyme senses a threat (either immune system antibodies/antibiotics/certain herbals)....it morph's into cyst form/biofilm blebs and then no abx can really touch it except for tindamax or flagyl are able to bust them open/kill them(along with some herbal's as well can do this).

http://www.ncbi.nlm.nih.gov/pubmed/21753890

http://lymediseaseresource.com/wordpress/dr-eva-sapi-forges-ahead-with-exciting-new-lyme-cultures/

""One mechanism of persistence of Bb is believed to be its ability to convert from the spirochete form to the cyst form in vitro when presented with an unfavorable environment. This conversion would allow the bacteria to evade the immune system and resist destruction by antibiotics that rely on cell division for effectiveness. When the environmental conditions become more favorable, the organism can then revert back to the spirochete form.""



I certainly wasnt saying go out and get some!! Just something that could be considered by the physician(LLMD) if it hadnt been considered yet. I KNOW one has to eventually use something for the biofilms/cysts or the lyme can continue to hide and not be touched. This is proven by the links above.

Also Marie, I have never heard of "blood showing severe herxing"....hmmm, thats odd!
Posted 6/27/2014 9:18 AM (GMT 0)
Orchid Rain,

The exact mechanism of a Herxheimer reaction is still officially 'uncertain'. The 'belief' is that the Herxheimer reaction is caused by the release of endotoxins from spirochetes after antibiotic intake and an elevation in cytokine levels (Tumor Necrosis Factor-a, Interleuking-8, Interleukin-16), causing those different symptoms of a Herxheimer reaction.

It is up to the doctor to put these lab results together, to take note of the symptoms that the patient is showing and consider it necessary to adjust treatment or put treatment on hold for a while.

I have been and still am in this situation. My cytokine levels were plain frightening (up until now I haven't met someone with such high IL-8 (and other IL's), there must be more, so I'm very eager to meet another person with such high interleukins smilewinkgrin ).
My doctor put me on anti-inflammatory medication and supplements, trying to bring it down, but it didn't do much. I had to take a 4 month break of all abx. I started up again after that, and 1 month later: even higher cytokine levels. They are slowly going down now.

He regularly takes my blood to check the cytokine levels, so he can adjust my protocol, go slower if necessary.

(A herxheimer reaction may also show elevated creatinine, blood urea nitrogen, liver enzymes, sedimentation rate, gamma globulin or a decrease in white blood cells, hemoglobin, or platelets. I had high dose IV-abx beginning of this year, and had my blood drawn while in the midst of a herxheimer reaction. I was always wondering if these changes in one's blood panel could be true while having a herx. I checked my results: elevated sedimentation, elevated creatinine and gamma globuline, and low platelets. Almost all of them showed...)

MarieLS

 

Posted 6/27/2014 9:57 AM (GMT 0)
RE: MarieLS

Right, well def in a nutshell it is mostly referred to as revolving around the toxins/die-off from antibiotics doing their job and the reaction of the immune system cytokine response, histamine, etc., etc....Ive just never heard of there being a "specific blood test" for measuring a herx reaction. Although of course there different markers for the immune response, inflammation, t-cells and such.

Ive been scrolling through posts on this site and I believe I read that your
heart rate was 100+ just a lil while ago! There is one very known Lyme doc that uses the heart rate bpm as a scale for recovery that I find rather interesting and have been using the marker myself.

Gosh, its amazing how much inflammation you are having! I know all of us deal with inflammation issues with this disease but....wow! Ive imagined you've tried curcumin (not turmeric-big noticeable difference). I cant take nsaids or aspirin so I recently started Jarrow brand curcumin and have noticed a difference in my inflammation (it takes a few days). I also take aloe vera juice for inflammation. I try to do as many antioxidents as well.

Im sure you would have had to looked into these things judging by the years you've been coping with this illness!! But if any strokes a cord...it would be worth the mentioning.
What about IV Glutathione (my llmd offers this-but I have no experience with yet)? Ive been hearing real good things about that. Or have you had your MTHFR genes checked to see if you can detox properly?

Gosh, I really feel for you battling this long. Please keep your head up & wishing you all the best with your recovery~
Posted 6/27/2014 10:32 AM (GMT 0)
Thank you for your kind words Orchid Rain, and the advice :-)

Yes, it's expensive puzzling with lab results :-)

Yes, my heart rate is never ever under 94bpm, often long periods above 100bpm, but these last weeks it's always around 112bpm... not a good sign.

And my histamine intolerance is back with a vengeance. I had been able to add foods over the course of 2 years, but all of a sudden I feel I'm back at where I started.
How is your heart rate evolving? I'm curious :-) does it show what that dr is claiming?

Yes, I tried curcumin (but couldn't tolerate it because of the histamine problem I have), Boswella same thing.

I used Zyflamend though, and that seems to work a bit. It's said to be an alternative for Diclophenac. Maybe you could try that? It has Turmeric in it, but the amount is doable for me. A bit heavy on the stomach, but definitely better than diclophenac. Like the Curcumin, it takes a while to work, but it's worth the try.
I use high doses of Omega3 and Resveratrol too. The Omega3 does make a difference (3x1200mg/day. DHA 500mg/EPA 130mg). Do you use that?

MTHFR is normal... but my dr still thinks I'm not able to detox for some unknown reason.

I'm Belgian, so IV Glutathion wasn't available until recently. I tried liposomal Glutathione though, but I didn't feel any difference. I def want to try the IV Glutathione, see what it does.

Assadi, sorry for the temporary hijack of your thread...

Posted 6/27/2014 10:57 AM (GMT 0)
Asada13,

Have you tried any anti-parasitic protocols? Look into Dr K's recommended ABX rotation, and consider trying Salt/C. I'm in my forth year with heavy duty ABX, herbals and supps and can't get over the hump with neuro issues. Could be parasites or protomyxzoa (sp?)holding you back.
Posted 6/27/2014 2:52 PM (GMT 0)
First of all, I'm sorry that you have't felt improvements. That would be difficult to endure.

I don't know why you haven't been getting better of course, but I just wanted to share a situation which may not be your case, but just throw it out there, cause you never know.

Anyway, a mom I know whose daughter has lyme said that the antibiotics were not helping at all (may have even made it worse, I can't remember though)
anyway, it turns out that the girl has a gluten sensitivity (or allergy?) and that antibiotics actually have some gluten in them I guess.
So, she switched to herbal treatment and the daughter immediately started seeing progress.

Again, I know this may not be your case; good chance it's not, but when I hear something that perhaps may relate, I like to pass it along just in case.
Posted 6/27/2014 5:38 PM (GMT 0)
Hey everyone, thank you so much for all the responses.

Orchid, my llmd put me on samento and banderol for 2 months before starting doxy to breakdown the biofilms. These two herbal abx are known to kill this form better than most pharmaceuticals. I've been on them then whole time at max dose. Two months on doxy and then four months on clindamycin. I think he's going to try IV Rocephin next, because it's supposed to help with neuro issues. I got my teeth that had previously had root canals done removed, just incase some bacteria may be harboring in them and affecting my brain. No change.

Marie LS- For detox, I drink 60oz of lemon water a day and take something called Vitamineral Green and Vitamineral Earth. I also take Epsom salt baths (though not as much as I used to). I drink a TON of detoxifying tea, too. Not sure if this is enough. I had taken pinella and parsley for awhile, but they didn't seem to have an effect, so my doctor told me to stop. He says he doesn't like to waste time if it's not working.

MisterMike- I think we've talked about our eye issues before. I have burry vision, double vision, floaters, inability to track, hallucinations, constant static, frequent pain, no depth perception... the list goes on. It is my most noticeable symptom and it has been constant for at least 12 years. Can't seem to kick it.

I recently took a brain test that shows motor function, memory, cognitive function, etc. My doc said he's never seen scores so low before. It really bothered me. I feel like I used to be so smart. How the heck am I ever goig to get back into school? Am I going to get back to my normal someday, or will I just be here forever?

Tickbite- I have not taken an anti-parasitic, although I believe the samento and banderol cover that area. I will talk to my doctor about that this week and see what he says.

I put a call into his office this morning to see if I should go back on the abx. Thank you again for all you responses. It's helping quite a lot. Also knowing that I'm not the only one with this issues makes me feel like maybe this thing (or things) are really tough to beat, but not impossible. I often have my doubts that I'll actually ever get better. My doctor is so optimistic it makes me want to scream at him. He has no idea what it's like to leave his friendly office and go back to my couch where I tend to sit in pain and misery.

Sorry this message seems so depressing. I'm usually very optimistic, I'm just at might wits end with all this.

Thanks again

 

Posted 6/27/2014 5:59 PM (GMT 0)
And stacestar, that is very interesting . I never thought about the gluten in my abx. I'll check it out. Thanks!
Posted 6/27/2014 6:12 PM (GMT 0)
asada,

No apologies needed. We all get frustrated with all this crazy treatment. I had spent a year with my fist LLMD with no progress, then changed to a more aggressive LLMD. Your LLMD sounds like he has you trying good combos, be patient. You can't try too many new things at once, and more is not always better given our condition.

I did IV Rocephin (and a boatload of other abx) for 14 months then 2 months of IV Doxy. It took almost nine months before seeing improvements. The neuro issues and brain fog will improve, just hang in there.
Posted 6/27/2014 6:43 PM (GMT 0)
My very first thought with not getting better is that maybe you have another coinfection that you've gotten a false negative for. I've been on antibiotics for almost 2 years with hardly any improvement. I finally tested positive for Bartonella recently and started being treated for it and am finally starting to feel a difference in my pain level. I think I Los have Babesia because of my terrible night sweats.

As others have mentioned, maybe try using a cyst buster. I was put on it after being on antibiotics for about 6 months and did fine. I took Tinidazole (I believe), 4 days on and 3 days off. By the 4th day my herx would increase and would be gone within the 3 days off the antibiotic. Now I'm on Plaquonil which also busts cysts but has a immune modulatory effect.
Posted 6/27/2014 7:55 PM (GMT 0)
Hi and Im sorry you are not feeling better. Are you on oral or IV abx ? If oral I have heard some people have to switch to IV if orals dont help. I was told just today of someone who needed a port in his head. Many more cases surfacing and they seem to be serious in nature.
Posted 6/27/2014 8:08 PM (GMT 0)
Asada, Some people simply do not respond to abx. There is such a lack of research on Lyme, that doctors don't know of anything else to do than to use abx. Adequate research might lead to the discovery of other treatments.

Have you tried Rocephin IVs?

My thought would be to try herbal and/or alternative treatments next.

Marie, I had tachycardia for years. At one point, my heart rate spiked at 150. It didn't help that I was also hyperthyroid, but even after my thyroid was removed, my heart rate averaged at 120.

I now see a cardiologist, and take Bystolic, and it controls the tachycardia. Have you thought of seeing a cardiologist?

Margaret
Posted 6/27/2014 8:09 PM (GMT 0)
PS,

I would try to isolate and take some of those drugs and herbs separately, as opposed to together, and see which help and which don't.

Margaret
Posted 6/27/2014 9:04 PM (GMT 0)
Hi Asada,

I had the same problem, my case was similar to Inspiredby3. I was being treated for Bartonella but in January i got really sick and after more testing i was finally diagnosed with Babesia Duncani I started treatment in February and finally i starting to feel the difference.
Posted 6/27/2014 9:19 PM (GMT 0)
Margaret,
I have seen several cardiologists... my llmd is even a cardiologist, and he is not worried. The others always said that my irregular heartbeat was caused by the chemo I once had. I don't believe that anymore...
I will insist on looking into it when I see my dr in August. So much to keep in mind...

Assada,
have you thought switching to a herbal treatment??

M
Posted 6/27/2014 9:28 PM (GMT 0)
I was tested for babesia and it was negative. I don't have any night sweats but I guess it co u ld still be an option. Maybe I should get another test? My llmd addressed babesia and put me on artemesia. I was on it for about 4 months and didn't herx very much from it so he took me off.

I've been on herbals this whole time, taking artemsia, samento, banderol, Abart, and allicin, in addition to the pharms.

My llmd called and wants me to come in sooner. Back on the abx. I have a feeling he's going to put me on rocephin IVs. I'm a little scared of them. For those of younwho have been on them, and advice/stories?
Posted 6/27/2014 9:32 PM (GMT 0)
I'm sorry Assada, I was mixing up 2 members, so sorry...
I know someone who took oral abx for about the same number of months, then herbals, and was still getting worse, is now getting IV abx. It is not uncommon to work like that.
Posted 6/27/2014 9:33 PM (GMT 0)
Is this person doing better on IVs?
Posted 6/27/2014 9:37 PM (GMT 0)
Just started it... don't know yet. But that is what the dr sees as a possible sollution... sorry... I can only say it is not uncommon...
Posted 6/27/2014 9:42 PM (GMT 0)
Well thank you. That does help. I don't want to feel like I'm an abnormally difficult case! I hope your friend does well on the IVs. I've heard they cross the BBB, and can really help kick the bugs out. Thanks again!
Posted 6/27/2014 10:00 PM (GMT 0)
rocephin IVs,

I have been taking the oral version of Rocephin and it helps a lot. It is not without side effects.It is very good for the mental effects of the disease. I also see you have not tried ammoxicillin. That one worked very well although I did herx quite a bit from it. Is also said to be relatively safe. Good luck.
Posted 6/28/2014 3:52 AM (GMT 0)
Not unusual to treat for long periods of time without results. I've been trying to get lasting results for 5 years but no such luck yet...but I'm extremely, extremely sensitive too, and have to be careful (have been hospitalized from herxing too hard).

So this past year, I decided to try something different... Looked into Rife technology, found a machine, and have seen some pretty good herxing from it that I never got from abx (oral or IV).

Also, testing negative for specific coinfection(s) does not mean you don't have it. The coinfection tests are less accurate even than Lyme tests (!!).

I don't test positive for any coinfections, but I'm pretty sure I have Bartonella (and all the LLMD's & LLND's I've seen agree), but when I ask about other coinfections, nobody knows (they actually tell me they don't know because my symptoms don't really point to any specific coinfections other than Bartonella).

I've recently developed night-sweats, however, but I've read that those can be either from Babesia or Bartonella...so I still don't know what coinfections I've got other than Bart.

Bottom line is, this disease is extremely complicated, and every case is unique. Dr. H wrote a book, "Why Can't I get Better" that may help.
✚ New Topic ✚ Reply
12