I have a clinical diagnosis. My igenex labs showed Igg bands 31, 34 and 41 all IND. My IgM showed bands 23-35 IND, 31 IND, 39 IND and 41 +
I am now on Malarone, biaxin, probenecid, amoxicillin, nystatin and plaquenil.
I am much worse now than before treatment. I am currently experiencing a sore throat, some chest pains, sweating on and off as well has headaches. Anytime I ask my doctor (Dr. M) she tells me "it could be babs, it could be bart, it could be a viral infection, treatment is not easy and not everyone can handle it" --What the hell kind of response is that?
Am I with the wrong LLMD?
My thigh muscle pain holds me back from doing anything physical. Before treatment I could ride a bike for hours, now I can hardly walk up and down the stairs a couple times.
Any suggestions? Thanks a lot.
P.S. Bart, tested 1:64 B quintana and hensalae with Fry lab--is this even positve? I can't get a straight answer. Negative for babesia but trying to treat it now.
Posted by Tincup (Member # 5829) on :
Sorry you are at the throw-in-the-towel point. You must be miserable!
But hang in there... good stuff is on the way.
I know.. I've been there numerous times before.. and for some reason.. I've come through it.
The bucket we all have that holds the garbage and toxins and die-off... well ... it sounds like yours is full.
I am NOT a doctor.. but.. my bet is you are throwing TOO much at this disease(s)... more than what you can clear out.
Some of us can't "do" that much all at once. Many of us can't.
The ONLY way I know to clear your bucket out and feel better is to stop adding more to it and give it a chance to drain.
Might take a few weeks to see some relief... depending on how slowly your bucket drains.
I can't say stop your meds for a while.. only a doctor can. But since you are worse... and you are miserable..
Your body is telling you to do something.
If it were me... knowing what I know now... I would stop.... reassess after I felt better... then start again with a more reasonable treatment protocol.
As for your doctor.. she is right in that we don't always know all the organisms that are causing the problems.
We can only do our best to try and help ourselves and others.
I hope whatever you do, you feel better soon.
Posted by purplemom (Member # 21064) on :
I agree with trying to get rid of too much of the bucket at once, sometimes slow and steady wins the race. I know we are all different in our response to meds
Posted by sonee123 (Member # 18632) on :
Knobs,
I have only clinical diagnosis as well and all lyme tests were negative. My doctor doesnt know what causes my symptoms as well eventhough i have told him i have improved on ABX alot but now since it winter i am back on day one of treatment. Really sick!
The question i ask is what is it if it's not lyme. What possibly could it be if i have responded to abx? I still don't know the answer and i dont think my doctor does as well.
confused.
Posted by springshowers (Member # 19863) on :
You have the same bands as me and a bunch of people who seem to test positive for that group of bands.. It is interesting.
Maybe we should start a thread and share comments and symptoms and see if that means we struggle with the same things? Who knows? 58 has popped up for me now after new testing and 23-25 comes and goes on my tests...
ANyway.. Yes I agree and have been in your position. I kinda still am but it is easing up. I have to say that when i was on Oral abx no matter how much I took or backed off or pulsed it seemed I was herxing like crazy and felt I would never get better or past the "feeling worse" part.
I treated for 5 years that way. I do not want to discourage you. Everyone is different. But I now started IV treatment and It is like night and day. In days or weeks i am getting through the herxing instead of never.
Maybe it would be an idea to ask your doctor about since you are at that point of feeling like giving up. I know that feeling well.
The other idea is to pulse your meds. That did help me some. Something like 4 days on and 3 days off. Or M W F. It gives your body time to get those toxins out and also a break on your immune system that gets a beating.
And lastly. Detox methods. When you feel really bad that way if you do things like increase your detox methods. Baths.. 3 or so a day instead of 1. Enemas..1 a day instead of 2 a week. Dry brush your body before each bath. Drink water and lemon in it. Also there are things like Bentonite Clay, Charcol or Welchol or Cholestrymine that can be added far away from suppplements or medications that is supposed to absorb toxins in your gut so it does not recycle into your body. Ask your doctor about those. The later two are prescriptions. The first two are not.
Those are ideas off the top of my head. I hope you feel better. And I hope you find what works. IF what your doing is not working look for changes. I find that I give a new treatment or idea about two months max to see if it is working. Usually for me 6 weeks. If not I change things around or talk to my doctor about changing it. Most doctors I know agree with this sort of time frame and some even cycle meds on purpose at this time frame.
Let me know if you might have any questions about what I wrote..
Blessing.
Posted by JamesNYC (Member # 15793) on :
Knobs,
I'm sorry to hear that it's so discouraging. The depression makes it all worse. That is what is making you want to throw in the towel. But you have to stick with it, if you don't, it's all going to get worse.
What were the clinical sx that made you think you had lyme?
And what kind of tests were done for Babs?
Are you taking anything to help cope with the depression?
I hope you feel better soon.
James
Posted by djf2005 (Member # 11449) on :
keep hanging in there, its a rough ride for sure.
i think knowing what i know now that lyme disease complex is probably one of if not *the* roughest illness to have.
ive been in tx since nov 07, had 6 months remission, relapsed may 09, and starting all over so yeah, its tough.
keep keeping on. if you dont feel comfortable w/ your dr, than id suggest looking into a new one.
hang in
-d
Posted by knobs (Member # 21928) on :
James: Babesia IgG was done with Fry Labs-negative (I know people often test negative and have it).
My first symptom would have to be lower back pain, then knee pain, then feet and ankles. This all got progressively worse over 5 or 6 years. After coming back from a 2 week work trip in western canada I became extremely ill. Extreme dizziness, brain fog, derealization, diarrhea for 4 months--left bed ridden for those 4 months. Saw a number of doctors, number of tests, nothing.
Got to the point that I was scared to go out because I thought I would die. Finally started believing doctor's and checked myself into a mental hospital. Stayed there for 2 weeks as they diagnosed me with severe depression and starting weening me on Effexor.
I actually felt much better after leaving the hospital. I still did not consider lyme at this point. I started feeling a lot better and, after a few weeks or months, I was riding my bike for a couple hours a day. Felt like I was getting closer to myself.
Tried to go back to work and the joint pain (ankles, knees, back) became to much to bear. When all these joints would go, my head would go--felt very spaced out, dizzy.
Knew I had more than just mental symptoms. Continued research and came across lyme. Found LLMD to give it a shot. Then you pretty much know the rest.
Depression is making me want to quit, you're right but there are other factors. At this point I'm working maybe once every 3 or 4 weeks. I can't justify going into more debt at this point-I don't have the resources (family/friends) to help support me financially. I need to get back to working (like everyone else).
Sorry to go on but it was good for me to write that down again--haven't done it in a while.
Thanks for all other responses--all sound like possibilities, just don't know which one to pick! Thanks for your concern.
Posted by METALLlC BLUE (Member # 6628) on :
Your test result was positive by logic standards, so I wouldn't say your diagnosis is clinical. Those numbers on Igenex really solidify the diagnosis.
You most certainly are co-infected. Treating the Babesia first is what I've been hearing lately. Some say Bartonella. Either way, most physicians are trying to treat both Lyme and one Co-infection together.
You may need to specifically focus on a co-infection. I'm not sure, but that's a possibility. You might be doing too much for your particular body.
Also, don't give up yet. You've still got some fire left in you yet. I know it's painful and I know it's agonizing, but until you're dead -- set your mind to survival at all cost.
Posted by knobs (Member # 21928) on :
Tincup - you're words are encouraging. I worry about stopping and starting again. My LLMD warns me that there are 'consequences' in doing that, meaning, you may not respond to abx as well next time around. My thought is I'm going backwards now so how does that help?
Spring - that's odd about common labs. I'd be willing to talk together with others to discuss.
Sonee - Hope you figure it out.
Posted by knobs (Member # 21928) on :
Metallic - thanks for the encouragement. Do you think stopping for a few weeks is an option?
Posted by Myco (Member # 9536) on :
It took me more than a year before I felt well. Treating the Bart really helped. I did Rifampin and Zithromax for 5 months and feel totally well now.
Your Bart titer is positive.
Most LLMD's treat Bart before Babs.
Posted by massman (Member # 18116) on :
Detox organs probably overwhelmed. All the drugs. All the die-off garbage and debris.
Posted by djf2005 (Member # 11449) on :
agreed. look into blocked methyl pathways as well as using a product like pekana which would aid those organs in the elimination of all the junk.
trying to kill everything all at once w/o adaquate detox measures (especially if you are DR-4 positive) is going to keep you sick for a long time.
Posted by Tincup (Member # 5829) on :
Hey knubs.. or is it knobs? HA!
You said.. "I worry about stopping and starting again. My LLMD warns me that there are 'consequences' in doing that, meaning, you may not respond to abx as well next time around. My thought is I'm going backwards now so how does that help?"
I won't argue with a LLMD.. and tell you to do anything different than they instruct you to do... but... I will share this.
1. Herxes can kill. Constant overloads of toxins and inflammation can be dangerous and certainly that condition doesn't make you feel better.
2. There is NO evidence that you will become resistant to the antibiotics if you must use them again later.
The only exception I have noted is that stopping and starting Mepron can cause problems. I see that shared in patient reports and their experiences... and have heard LLMD's say that too... but as far as I know.. it is not in the literature, yet.
I am not privy to all the LLMD's knowledge, of course.. but even the IDSA says there is no evidence that repeated treatment with antibiotics has shown to cause any resistance in Lyme patients.
As for my own experience ...
I have started and stopped doxy, for example, many times over the many years. Each time it works to make me better.. and each time I herx from it.
I have also suffered and suffered on large doses, not stopping when I should have. I ended up in the ER more times than I can count.. year after year.. till I finally said ENOUGH!
BTW- We didn't know what a herx was back then.
My point- even taking what is prescribed at the doses they were prescribed.. and following ALL the rules 100% did not cure me.
Sooooooooooooooo..
I just want you to know these little diddys. For what it's worth.
Posted by METALLlC BLUE (Member # 6628) on :
quote: Metallic - thanks for the encouragement. Do you think stopping for a few weeks is an option?
I think it's an option but it's one you really need to consider with your physician and to think carefully about. Sometimes riding it out is necessary but not if it's putting your life on the line. Mental breakdowns or excessive suffering from herxheimer reactions really aren't necessary -- but if you can decide where you stand, then that may give you a better feeling of control over what you're doing.
Treatment takes an awful long time, that much I do know.
Posted by knobs (Member # 21928) on :
Thanks to all for your advice--it all really helps.
I think I am going to stop for a while. I am very open to revisiting treatment again but I need to get back to where I was before treatment.
For the first time in months I feel like I finally have some direction because I've made a decision. I will look into liver and kidney cleanses while I'm off--try to get my body back.
Really, good luck with everyone and don't be surprised if you see me back here with a better frame of mind.
Oh, and any people who have had success in taking a break, feel free to give encouragement!
Posted by Tincup (Member # 5829) on :
You best be back to tell us how you are doing! We want to see the smiles when you finally feel better.
OK?
Posted by knobs (Member # 21928) on :
Deal! Thanks Tincup.
Posted by knobs (Member # 21928) on :
Should I still take my supplements? Or any new ones?
Posted by djf2005 (Member # 11449) on :
I would continue to take whatever you feel comfortable with. Although, if you are not familiar with how your body reacts to each individual supplement/abx, etc, then it would be hard to advise on this.
Some supplements if not many are just as potent if not more than abx.
If you need a break, and are relatively sure the supps are not causing the flaring, then I'd stay on them.
I'd also listen to tincups pointers, they're all pretty much right on.
-D
Posted by Tincup (Member # 5829) on :
Knubs said..
"Should I still take my supplements? Or any new ones?"
Since most supplements are only to be taken for short periods of time.. like 6 weeks in many cases...
Why not throw caution in the wind and stop them all.
Be free dear knubs, be free!
You most likely won't kick the bucket if you take a total break for a couple of weeks.
If you do kick the bucket from not taking them... don't come back here blaming me!
Anyhow.. by taking a complete break your body can start to get use to the real world... you'll save a few dollars in the process (I like chocolate in case you were interested in spending that money)....
And your body will get the rest and well-deserved break it needs.
Once you "level out" and feel better...
Reassess your needs and your symptoms and such. Then slowly IF needed... add a supplement back... one at a time... IF it is even necessary.
That would be MY suggestion and I am not a doctor.
Good luck and report back soon, little baboon!
Posted by timaca (Member # 6911) on :
Knobs~ Many things can cause the problems you describe. Hopefully you've been thoroughly evaluated for all the usual issues: Vit D deficiency, thyroid issues, anemias, etc.
If those are OK then check out infectious pathogens. Your lab tests are not suspicious for lyme. If you wish, retest. However, I would also suggest testing for viral pathogens, including HHV-6, EBV and enterovirus.
Best, Timaca
Posted by Pinelady (Member # 18524) on :
I would try the supp. coconut oil. If you get a whopping big reaction like I did I may think you have a virus also. Which is not uncommon but could be addressed.
Posted by Jason21 (Member # 16393) on :
knobs,
If you feel worse for more than a week after starting a new abx regimen, you may be having a reaction to the meds instead of a herx or die-off reaction.
My wife tested positive through Igenex for LD, as well as babesia and ehrlichia (so don't tell me LD cannot be transmitted to a spouse because one of us probably gave it to the other!). She cannot tolerate Biaxin and had headaches, chest pain, and the sweats just like you.
Also, I was ok with doxy when I took it for 5 months last year at the beginning of my treatment. I then switched to Biaxin and Flagyl for several months.
When I switched back to doxy, I started having overwhelming fatigue. At first, I thought I was herxing, but after being on doxy for a month I realized the fatigue would start about 30 minutes after I took doxy and would only last a couple of hours.
I stopped the doxy and felt much better.
I would talk to your doctor about possibly going off all meds for a few days and seeing how you feel. Then maybe you can add them back in one at a time and see if you can determine which one is causing your possible side effects, or whether a certain combination of meds is what is bothering you.
I understand your frustration regarding your thigh pain. My legs kept getting worse to the point that I could barely do 5 minutes on the elliptical machine.
You might want to try a muscle relaxer. Skelaxin worked great for me.
Also, you may have knots, or trigger points, in your thigh and/or hip area. I think LD causes chronic inflamation of the muscles, which sets up trigger points.
Trigger points cause the muscles to stay in a constant state of irritation, which causes pain and weakness.
You can locate and treat these trigger points yourself using the Trigger Point Therapy Workbook.
Posted by treepatrol (Member # 4117) on :
I am now on Malarone, biaxin, probenecid, amoxicillin, nystatin and plaquenil.
I am much worse now than before treatment. I am currently experiencing a sore throat, some chest pains, sweating on and off as well has headaches.
Headaches biaxin xl, sweating possibly malarone when i was on mepron it caused me to have drug induced fevers around my 3rd month you need to drop malarone if thats the cause.
Mepron What side effects may I notice from this medicine? (Back to top) Side effects that you should report to your doctor or health care professional as soon as possible: allergic reactions like skin rash, itching or hives, swelling of the face, lips, or tongue breathing problems fever or infection unusual bleeding or bruising unusually weak or tired sore throat, white patches in the mouth
Side effects that usually do not require medical attention (report to your doctor or health care professional if they continue or are bothersome): cough diarrhea headache nausea, vomiting runny nose stomach pain trouble sleeping unusual sweating
Plaquinil What may interact with this medicine? (Back to top)
This list may not describe all possible interactions. Give your health care provider a list of all the medicines, herbs, non-prescription drugs, or dietary supplements you use. Also tell them if you smoke, drink alcohol, or use illegal drugs. Some items may interact with your medicine.
What side effects may I notice from this medicine? (Back to top) Side effects that you should report to your doctor or health care professional as soon as possible: allergic reactions like skin rash, itching or hives, swelling of the face, lips, or tongue change in vision fever, infection hearing loss or ringing muscle weakness, tremor, or numbness redness, blistering, peeling or loosening of the skin, including inside the mouth seizures unusual bleeding or bruising unusually weak or tired
Side effects that usually do not require medical attention (report to your doctor or health care professional if they continue or are bothersome): change in coloration of the mouth or skin dizziness hair loss, lightening headache irritability, nervousness, nightmares loss of appetite stomach upset, diarrhea
Malarone
What may interact with this medicine? (Back to top)
metoclopramide rifabutin rifampin tetracycline
This list may not describe all possible interactions. Give your health care provider a list of all the medicines, herbs, non-prescription drugs, or dietary supplements you use. Also tell them if you smoke, drink alcohol, or use illegal drugs. Some items may interact with your medicine.
What side effects may I notice from this medicine? (Back to top) Side effects that you should report to your doctor or health care professional as soon as possible: allergic reactions like skin rash, itching or hives, swelling of the face, lips, or tongue breathing problems changes in vision fever or infection redness, blistering, peeling or loosening of the skin, including inside the mouth unusually weak or tired
Side effects that usually do not require medical attention (report to your doctor or health care professional if they continue or are bothersome): cough diarrhea dizziness headache loss of appetite nausea, vomiting stomach pain trouble sleeping
Posted by knobs (Member # 21928) on :
Thanks for all responses. I stopped taking all pills last night and had my first free day in 10 months. Mentally, I feel fantastic--people around me haven't seen me happier in years.
Physically I'm still well behind but have been more active today than I have in months.
I am sticking with the diet for a few weeks and hoping that I get my body back to where it was before I started ...I'm really looking forward to feeling better.
I'm thinking positive for the first time in months and feel I have some direction again.
I will reevaluate my symptoms and treatment options soon.
Posted by METALLlC BLUE (Member # 6628) on :
I think you made the right choice (from a patients perspective). I would have done it. I have done it, and still do it. It will not solve your problem -- so set realistic goals. Today is today, tomorrow can be an entirely different demon.
Work on being positive for the day you win the war, but be satisfied with performing well in the battle today.
Posted by knobs (Member # 21928) on :
Third day without abx and I feel very dizzy this morning--spaced out, feel like I'm dreaming. I haven't felt like this in months and months. I have been pushing it really hard the last couple days and because of that, my eating and sleeping patterns have changed--went to bed hungry last night and slept for 11 hours (as opposed to the usual 7 or 8)!. I woke up starving and completely out of it.
Does this sound like a deficiency in something? Lyme? Or just my body adjusting to the shift in changes. Ride it out a while longer? I really don't know what I'm "supposed" to feel like anymore; I truly don't.
Could a symptom like that come back 3 days after stopping abx? It's also felt like I've been fighting off a cold for the past 5 or 6 days.
[ 11-05-2009, 01:02 PM: Message edited by: knobs ]
Posted by knobs (Member # 21928) on :
Continued suggestions would really help! Really not sure where to go with this.
Posted by FunkOdyssey (Member # 15855) on :
On approximately the second-third day after I stopped taking amoxicillin I also began to feel terrible.
I had a theory that maybe the high-dose amoxicillin was forcing all the bacteria to hide in the cyst form, and then when the amox was suddenly withdrawn, they all popped out at the same time. If this is true it would explain why my previous LLMD would encourage 7-10 day breaks between courses of ABX (to kill more spirochetes in their traditional form).
Posted by knobs (Member # 21928) on :
OK. Still thinking about all of this a lot. What if my current problems are yeast? What if yeast has been my problem for a long time?
About 3 weeks before starting this combo of abx, I was only on nystatin and plaquenil and doing much better. Maybe feeling more symptoms now because I stopped nystatin and probiotics?
Just another thought
Posted by knobs (Member # 21928) on :
up
Posted by knobs (Member # 21928) on :
?
Posted by Tincup (Member # 5829) on :
Hey dear.. I will come back and respond and try to help.
Gotta get some food and meds first... it's grits time!
Posted by knobs (Member # 21928) on :
5 days after stopping my joints are really hurting again. While on abx, my thigh muscles heart a lot and gave out before my joints. Now, joints die on me far quicker than my thigh muscles.
I've suspected a yeast problem for a while but I don't know how to believe that. I'm staying strict on the diet and with probiotics.
I could really use some feedback!
Posted by knobs (Member # 21928) on :
Looks like I'm talking to myself here but I'm going to keep doing it.
9 days off ABX and I'm more strict on the diet now than ever. Still taking nystatin 2 pills, 3 x day. Lots of natural yogurt and probiotics.
My joint pain has gotten much worse. I was standing in one spot for a couple minutes yesterday and my knees were in a ton of pain for the rest of the night. Woke up very stiff and sore today.
Still hoping I am tackling a yeast problem.
Going to see my naturopath tomorrow for acupuncture and possible heavy metal cleansing ideas.
I've been feeling fairly depressed the last few days. Very low energy, lots of joint pain and brain fog. Hopefully a worsening of symptoms before getting better!
Posted by Tincup (Member # 5829) on :
Bless your heart! UGGGGGG!!!!
And dang me, dang me!
I didn't "see" your post... and as the brain goes.... no see, no memory. SO SORRY!
Don't feel like I am ignoring you.. I'm just one sandwich short of a picnic!
Ok...
I will suggest.... could it be this is your "herx" time.
Folks often forget that even though they have stopped meds... they will still have a "regularly scheduled herx".... because they WERE taking the meds and you can't go back and reverse that.
In the meantime...
Hang in there.. I'll get some other opinions while you are responding.
Posted by knobs (Member # 21928) on :
Tincup, I wasn't gonna pm you to ask why you didn't respond, I knew you'd come back eventually!
I was never able to keep track of a regular herx.
I am having heavy cravings for carbs and sugar but am definitely not giving in. I stopped all pills including nystatin and probiotics for the first couple days after stopping ABX--felt better then.
Now, after resuming them for a little over a week, I'm going downhill a bit but feel like I could be fighting the yeast ...just not sure of anything at this point.
Posted by sixgoofykids (Member # 11141) on :
With candida treatment you also feel worse before you feel better, so if you're starting into candida treatment and stopping abx, that may have to do with why you feel worse. That's probably why you felt better OFF the nystatin and probiotics.
You also might look into the KPU/pyroluria/kryptopyrroluria protocol we've talked about so much. Do a search of the forum and you will find a lot of talk on it.
A coffee enema might help take away some of the toxic feelings.
Hang in there, don't give up!
Posted by Pinelady (Member # 18524) on :
Have you had any blood work done lately?
I have noticed a dramatic improvement since
starting vitamin E with coconut oil. I don't know
which supps you are taking but many can cause you
to get worse. Something to check on.
Posted by Tincup (Member # 5829) on :
knObs said.. "Tincup, I wasn't gonna pm you to ask why you didn't respond, I knew you'd come back eventually!"
My mind holds a thought for about 10 seconds on a good day... so PLEASE do ring my bell if I am not paying attention.
With the carb cravings it could indicate a yeast thingy going on.
I know my carb craving was awful when I try to kill off yeast. I ached for carbs.
It took me about 2 weeks to have the craving slow down to a reasonable level... then I was much better.
The other thought...
When people go downhill quickly after stopping antibiotics.. within days... not weeks...
It can sometimes indicate you need to look at Bartonella as the cause.
But that is if there is NO other reason for the drop.. which in this case there MIGHT be?
Just put that thought where you can address it IF needed.
OK?
Posted by knobs (Member # 21928) on :
^^ I did treat with rifampin, plaquenil, minocycline and nystatin for 7.5 months with a slow but steady decline. Maybe need to revisit the rifampin or try levaquin (sp?) in the future.
I definitely skipped doses of nystatin and probiotics early on in treamtent--also ate a lot of white pasta. Maybe this is where my yeast problems started?
Good to get some feedback. Joints actually feel a little better after lunch.
I am not taking any supplements at the moment as I will discuss this with my naturopath tomorrow.
Thanks everyone.
Posted by springshowers (Member # 19863) on :
At first glance at the list of ALL the meds you on.. Maybe it is too much at once? or maybe your reacting to one of them? Did you start one at a time? To be able to evaluate your response. I had a very tough time on Biaxin. I felt worse and worse and worse.
I recommend isolating and try to make sure you know what each med is doing for you or too you.
YOu might find some answers there??
I hope you feel better. I so know what it is like.. and never wish anyone to feel like us lymies do..
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