RZR
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Member # 20953
posted
I look back and feel like I am getting worse instead of better. Of course, I am not sure what symptoms are caused from parasites instead of lyme & co.
Worse symptoms are finger-joint pain and swelling, back pain, sore shoulders, sore feet, hot flashes and chills, weight loss, extreme fatigue, cough.
I do know I have babesia....treating for 2nd time. I am not sure if bart is gone or not....I took Rifampin for 6 months and been on Levaquin 2 months. I still have sore feet, but it's all day (not just AM). Is this babs?
I herx nearly every day but never feel any better. Do I keep going or stop all abx and try something else....Cowden, rife? I do have a GB-4000 on the way, but want to combine it with something until I feel somewhat better.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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tick battler
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posted
I would do the Dr. K cocktail and GSE and rife. You probably need to hit candida (GSE will help) and also do a lot of detoxing as well with clay and chlorella.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
Although I, like you, have been at this for a long time (ill for 3 years, in treatment for 2.5), and also am not much better, here are some things to think about nonetheless...
Are you with the same LLMD? If so, perhaps it's time for a change, a new set of eyes to look at things.
Have you tried treating parasites? I have not and I suppose that I should "practice what I preach" (LOL!), but quite a few folks on here have claimed that that was, in fact, the missing piece for them.
Good luck!
~tri
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
RZR, I have been treating for three years too and am about to decrease Mepron, or go off it altogether. It scares me because I have been on babesia meds the whole treatment. Your symptoms sound babesia-like to me. I would stay the course with babesia meds because they take a while to build up in your system and for the symptoms to abate.
This is my experience, so I don't know if it would be effective for you or not. But, even while on babesia meds I still had the flushing sweats, pain in my feet, joint pain in my feet and hands, faciculations and some thick gunk in my throat at night. A very low dose Ivermectin (1/2 3 mg pill daily) seems to resolve these symptoms for me. I've gone off Ivermectin and the symptoms return.
Haven't you been treating parasites aggressively? The Ivermectin for me is more of a Fry Protomyxzoa treatment. I can't handle doses more than what I'm taking because of the die-off. My LLMD said Dr. F. wants patients to start slow and work up to whatever they can handle.
Posts: 964 | From san diego | Registered: Oct 2009
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Your sore feet sound like bart.
Although I don't do the temperature thing, check out what Burrascano says below (from his Lyme Guidelines, Advanced topics in Lyme Disease, 16th edition):
Repeated treatment failures should alert the clinician to the possibility of an otherwise inapparent immune deficiency, and a workup for this may be advised. Obviously, evaluation for co-infection should be performed, and a search for other or concurrent diagnoses needs to be entertained.
There are three things that will predict treatment failure regardless of which regimen is chosen: Noncompliance,alcohol use, and sleep deprivation. Advise them to take a break when (or ideally before) the inevitable mid afternoon fatigue sets in (napping is encouraged).
All patients must keep a carefully detailed daily diary of their symptoms to help us document the presence of the classic four week cycle, judge the effects of treatment, and determine treatment endpoint. One must follow such diaries, temperature readings in late afternoon, physical findings, notes from physical therapists, and cognitive testing to best judge when to change or end antibiotics.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
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posted
Maybe you could try another route? Herbs, Salt C, definitely parasites. I have found when I work on parasites it helps minimize my babs symptoms.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
quote:Originally posted by triathletelymie: Although I, like you, have been at this for a long time (ill for 3 years, in treatment for 2.5), and also am not much better, here are some things to think about nonetheless...
Are you with the same LLMD? If so, perhaps it's time for a change, a new set of eyes to look at things.
Have you tried treating parasites? I have not and I suppose that I should "practice what I preach" (LOL!), but quite a few folks on here have claimed that that was, in fact, the missing piece for them.
Good luck!
~tri
On my 4th LLMD! I have been with her over a year now. She was trained by a couple of top LLMDs. So, I feel ok there.
Parasites...That's a whole other story...been fighting them for 2 years and still a problem.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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RZR
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posted
I thought sore feet in AM was bart, but all day was babs....anyone know?
Can Malarone be taken completely by itself? Just thinking I might switch to herbs and keep Malarone.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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tick battler
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posted
You might also consider getting EDS testing done with a really good practitioner who can test malarone and whatever you plan to take against babesia to see if it works. It certainly makes life a lot easier than shooting in the dark!
I tried the abx with my kids and husband for 3 years with only some progress and then switched to the natural route and found that herbs along with EDS or muscle tseting work much better!
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
It is impossible to line up symptoms with different infections. Nightsweat does not even hold true. Hormones lacking, quietly moving metals, all can change the picture and it is sort of silly to try to say that such and such an ache is caused by this or that. Not even Dr. Burrascano knew that and things have changed every years. We are having EMF and Radiation exposure big time, mutation of bugs; we know that most people with Lyme also have the Lungworm starting with problems in the gut and moving all the way up through the system until it hits the sinus.
Sort feet is not bart and it is not babs. We are all contaminated with toxic metals and chemicals, the major reason we got sick in the first place. If you have any lingering dental issues - bad teeth often do not hurt because they are actually dead - that needs to be found.
There are doctors and practitioners everywhere in the country, and it may safe yourself a lot of pain and expense to find someone who can do energetic testing. Anyone with ART can find out during the first round what your major problems are and how to approach correcting them.
It may involve some travel, but after the initial visit much can be done by phone. Almost all of Dr. K.'s patients come from somewhere else. There are several other practitioners who practice similarly. Or Call the Klinghardt Academy and find out if there is a certified ART practitioner closer to you.
If you are only interested in pharmaceutical treatment, then of course this is not for you, even though all these people use everything if it works.
To stay positive is so important -- I know how difficult it is because I have been there. There are definitely other approaches to pursue. Tickbattler is finding that out now. Don't waste precious time - and believe me when I say that parasites and toxic metals are a huge problem with literally every person that is settled with Lyme. We have learned a lot over the years -- I remember how limited things were in 1996 when I started and when I thought I would not last unless I got a Rocephin IV every day - 24/7. I had become allergic to it and didn't know it until I met Dr. K. and I will never forget when he said "I would give it to you if it worked. But it doesn't." That's what started me on the other route of herbals and a lot less toxins and got me out of the hole I kept falling back into.
Please consider finding someone to do energetic testing -- ART, EAV, any good sort of muscle testing. I use the tensor myself and know exactly what I am facing and what works for me and what not. Learn to use a pendulum.
If you learn to use a tensor or pendulum, you can figure out what causes your aching feet --- My guess is it is gravity working on toxic metals. Infections thrive in toxic metal terrain.
Everything needs to be treated together. Your protocol should cover all problem areas. There is no waiting to get rid of infections and then do such and such --- this is not how it works.
I treated toxic metals, babesia, lungworm and other parasites, all together with mycoplasma, bartonella, bb, etc. They all live together and that is the approach that works if you stick with it.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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You have a very good LLMD who is also a Naturopathic Doctor. You pay good money and have to travel a good distance to see her. Therefore, I would have a very frank discussion with her at your next appointment and then come up with a detailed plan (including a timeline) and stick religiously to that plan.
As you know, I have the same LLMD and am making good progress on the Cowden Protocol. I plan to follow it EXACTLY (even when I feel bad) and will continue to do so until the end of the six months. Cowden is a six month protocol and I intend to follow it through to the end in order to give it a fair chance to work as designed. Then, I'll re-evaluate my situation with my LLMD and decide if Cowden has had the desired effect and if any changes need to be made.
I get the impression from reading the forum here that MANY people are bouncing all over the place with their treatment. It certainly seems that many people are changing dosages; starting and stopping treatment; adding or subtracting drugs; and otherwise being erratic with their treatment without consulting their LLMD. I have to wonder if that is at least part of the reason that so many people aren't getting better.
Posts: 177 | From Ohio | Registered: Aug 2012
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posted
I have been taking 6 Malarones a day and decided to go of it and on to Mepron instead, because I have the MTHFR mutation and Malarone messes with the folic acid.
Anyway, my LLMD called it in for a double dose, I was surprised because we hadn't talked about it. Anyway, I am having pretty much the same symptoms as you. Well, I am herxing! I haven't herxed Babs since if first treated it 2 years ago.
I kept having symptoms on Malarone, it didn't get worse, or better really. I think with Malarone the absorption isn't that great. Then also I think there is some degree of resistance after treating Babs a number of times. Hopefully I'm on to something here.
I'm sure that Gigi is right about parasites and metals.
Posts: 845 | From Northeast | Registered: May 2011
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RZR
Frequent Contributor (1K+ posts)
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posted
PatriotM...
I have an appt. next week with our LLMD and do plan to discuss everything.....just trying to get ideas to discuss with her and get her opinion. I discussed rife with her in the past and she said I could try it, but she knows nothing about it.
I really don't think I have "bounced all over the place" with my treatment. I have been on abx 3-1/2 years....18 months babs treatment, then onto bart but babs relapsed. So, yes I did have to get back on babs meds. Been treating parasites for 2 years as soon as I knew they were a problem.
I will have to say I am guilty of bouncing to other LLMDs when the first one treated no co-infections in 1 year and the second one wanted to pulse babs treatment while I was still very sick with babs. I moved on.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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quote:Originally posted by RZR: I really don't think I have "bounced all over the place" with my treatment. I have been on abx 3-1/2 years....18 months babs treatment, then onto bart but babs relapsed. So, yes I did have to get back on babs meds. Been treating parasites for 2 years as soon as I knew they were a problem.
RZR, I wasn't talking about you necessarily. However, as you read the forum, you'll see that a lot of people seem to be self-medicating; changing meds by themselves; starting and stopping treatment, etc.
My point is that I believe a more reasoned, deliberate approach directed by a competent LLMD would have a better chance of working. Furthermore, every approach would take a certain amount of time consistently on those meds or methods to be successful.
Anyway, I'm sure that you and Dr. R can come up with the right approach.
I'm a very good judge of character and I find her very knowledgeable, competent, and professional.
Posts: 177 | From Ohio | Registered: Aug 2012
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
[/QUOTE]RZR, I wasn't talking about you necessarily. However, as you read the forum, you'll see that a lot of people seem to be self-medicating; changing meds by themselves; starting and stopping treatment, etc.
My point is that I believe a more reasoned, deliberate approach directed by a competent LLMD would have a better chance of working. Furthermore, every approach would take a certain amount of time consistently on those meds or methods to be successful.
Anyway, I'm sure that you and Dr. R can come up with the right approach.
I'm a very good judge of character and I find her very knowledgeable, competent, and professional. [/QB][/QUOTE]
Totally agree! Thanks!
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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lax mom
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posted
You are in good hands RZR.
I hope you are able to make steady progress toward regaining your health.
Bugg
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Member # 8095
posted
I read that you were on rifampin. There is evidence in the medical literature that this can cause osteomalacia due to interference with your body's ability to absorb vitamin d. Levaquin can. Also cause tendon issues. Your soreness and pain may be due to vitamin d deficiency. You can't imagine how much pain and sorness my body was in due to vitamin d deficiency.
I would bet that you are also seeing an increase in twitching muscles...this may be due to your body not absorbing enough calcium. I would make sure I have adequate vitamin d levels to absorb the calcium.
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