quote:Originally posted by lou: Robin, glad you found something that worked. That is not a very big dose. Is it oral? But a lot of us may have other unidentified bugs that clindamycin may be hitting. The fact that you don't know about them does not mean they aren't there! Treatment seems to be a trial and error thing so often, because we don't know entirely what we are dealing with.
To answer you, Lou, yes, it's oral clindamycin. 150mg 2x/day now. 4x/day when I started.
And yes, one researcher told me it could also be hitting mycoplasma.
I don't think I have any other co's, so don't know what else clinda would be hitting. It's my Lyme symptoms that it has been treating - fibro pain to zero, joint pain down I'd say about 80%.
Now back to Mike: I like sixgoofy's suggestions to look more broadly. We have reports, for example, from Lyme patients going to India for stem cell injections and they are just about 95% better.
So I encourage you to take a look at all treatments people are trying, not just abx.
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CD57
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Metallic I am soooo impressed with your record keeping. You have one of the best LLMDs in the county. What does he say about all of this?
I don't have strong herxes to meds either, and while I am better than when I started out 3 yrs ago, in some ways I am much worse (CNS/psych). I now have permanent damage acquired ON treatment (go figure). My LLMD has suggested that my immunological impairment is a reason for my lack of strong herxing and thus improvement. I don't know what I have to do to boost this, but I will do anything. I am trying to look into IVIG but don't know if that will help. I reintroduced LDN after quitting it so we will see if that does anything.
What does your gut tell you is your biggest issue?
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Have you tried immune modulation?- this is very poorly researched subject in US , but very interesting one and unlike alternative treatments it has plenty of clinical research(done outside US ) backing it
LDN is a first thing you can try -easily accessible in US , it is also interesting that it uses different mechanism than other immune modulators -it acts on opiod receptors, it seems help MS people
Then there is cycloferon, polyoxidoniy ,licopid (and many others but those are most mainstream -available trough some overseas pharmacies) They have very safe profile and are used for in wide range of applications ( HIV, TB, hepatitis, other chronic and sometimes acute infections of bacterial and viral origin)
I do suggest to stay away from IVIG and interferons though as unlike those listed above they directly introduce exogenous cytokines into the system, this approach has has high probability of negative side effects. The drugs listed above act on signaling pathways - so cytokines are produced by your own body .
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:
Bugg: I am so sorry that you have struggled so profoundly for so long. I wish I had the "magic answer" for you.
If you should ever want it, I can PM you the name of a highly-regarded, world-reknowned tropical disease expert who is supposed to be one of the foremost diagnosticiations in "rare diseases"....I have no idea if you would need such an expert, but I'm happy to pass his name onto you....
Sure, yes that would be helpful. Any information is useful.
quote: JamesNYC MB, That was the most amazingly complete response to all the posters to this topic!! It must have taken HOURS! LOL Great Job!
I had chronic UTIs for several months after I had my rash from my first infection. It was a "non-specific" type. I would be get 2 weeks of Doxy, the UTI would go away, only to come back. I'd be retreated, etc. Other people have reported UTIs that wouldn't go away too. I was just wondering if you had that sx too.
Hang in there, we're pulling for you.
I remember reading about quite a few people who suffered from the UTI issue as well, so clearly immunocompromised patients are -- as we already knew -- at risk for other infectious diseases that they'd be less resistent too. Interestingly though, many of us also notice we're more resistent to some infections, such as the cold or flu. While of course we still can get these while sick, it's been a trend I've noticed in my own life. Whenever my health improved, I suddenly had colds occasionally and even the flu. Could be anything, maybe it's nothing -- just an observation.
And thank you, I am just really busting my balls here doing everything, but it takes such a long time to explore ever option. Not to mention many options require extensive periods of time just to complete "one" thing. If it works, great, but in my case nothing has, so that's why I got frustrated and asked for help.
quote: springshowers MB I may not have read every detail of our post. But what IV antibiotics have you done? I think I read Rochephin. But anything else?
I am curious if maybe you have exhausted all of that route. I am doing IV antibiotics for the first time and Its too soon to give a result on it but I am feeling like I respond much better to the IV than the Oral and can tolerate much higher dosing by far too.
I did IV Vancomycin for 4 1/2 weeks or so, wit Oral Penicillin at the time. I haven't exhausted the IV route, so I'm wondering what you and others have for options. I've gotten some good feed back in the thread but I'm sure there is a lot more. IV is in my future, I'm pretty certain of that. I just want to make sure when I commit to it (Given I had sepsis before), I want to be prepared and safer. I didn't "know" it was sepsis until it nearly killed me, my specialist in Boston just brushed it off as part of a "Herxheimer" response. I told him that severe chills and high fevers didn't seem like a herxheimer to me. He told me to have the line pulled and that was when I ended up in the emergency room just a day later. So if I'm reluctant, seeing the white light sort of dose that to a person I'd think. I will do it though, because I know it's the logical next step, but I want to make sure my ducks are in a row and that I'm not missing treatment for other infections before I step into treating Lyme at full speed. The Babesia and Bartonella absolutely must be addressed more fully in my opinion. If I improve after addressing those, I'll know I can move onto the IV, but if something else is lingering unchecked, such as another parasite (besides babesia) or .....perhaps something else, I have to figure it out.
quote: sixgoofykids I Metallic. I read your first post, but not all the others .. just saying in case my post doesn't follow with the thread.
I found that abx got me to a certain level of functionality. That was okay, especially since my functionality on them was a bit higher than yours.
However, I wanted more, so I was open to trying something different. You can't keep trying the same thing and expect different results.
Certainly, that's what we've talked about through this thread. Systematically exploring all the options until we move to the next stages. You and I shared the same doctor (I am not aware if you still see him), and so we've done things in a consistent pattern and constantly strived to move into new areas. Currently we're seeing if a drug called VFEND might work. I'm on it now, -- my second day -- and we're hoping to see results within two weeks. It's an anti-fungal drug but also, possibly, may have strong effects on Lyme and other bacterial infections. It's a weak study, but the study done on Diflucan was the "possibility" factor that led me to convince him to give it a shot. To do it meant I'd have to stop all treatment which is exactly the point I was at. I needed a break. I've been going full steam for 7 years and my mind is burned out. A lot of factors have been going on in my life right now that have discouraged me and so I really needed to pull myself together gradually and come here to find out "all" the things that are available. My LLMD is well versed in a lot of stuff, but once he starts hitting a wall and gets stuck, he'll try to experiment. Experimenting means you're all alone really.
quote: sixgoofykidsThe two biggies for me were Bionic 880 therapy and KPU protocol. Bionic 880 has kept my infections down for 10 months now. KPU helped with the remaining symptoms due to its influence on detoxification I believe. Given your CNS symptoms, I would look into it.
It's been covered. It's a possibility down the road but cost at present is not feasible. However, since Erica lives just south, I will perhaps go if other options do not yield anything worthwhile. I'm glad you've continued to feel better than you were.
quote: sixgoofykidsCurrently, I take one Depyrrol in the morning, thyroid, iron, mag, and oil of evening primrose. I take an herb to help with sleep. I photon once per month. That's all I do.
Pretty basic routine, I'm sure you're happier not being pumped up on drugs.
quote: sixgoofykidsI add in detox once in a while. Currently I'm doing the Dr. Natura cleanse. Amazing. I've also done several rounds of Humaworm. Both help, as did Hulda Clark's liver cleanse (I did five before it was "clean").
Now I'm 100% and still improving ... what's improving is my sleep is getting deeper, I started dreaming again, and I fall asleep earlier and wake up earlier. That's a sign that the adrenals are healing.
Humaworm? Is that available by prescription or another way? I know about Dr. Hulda Clark's routines to some extent, and of course keep that in the back of my head for down the road. Dr. Natura cleanse, What is that?
quote: sixgoofykidsAlso another thing that's improving is my muscles. I had some atrophy on my left side (I am left handed) and am working on that with Pilates. I also have a chiropractor .... that is helping because I was all out of whack having one side stronger than the other. So, at this point I'm dealing with the damage done from the disease and not the disease itself.
I have all the Crohn's symptoms, but was unwilling to see another doctor so am not formally diagnosed. I eat lots of fermented foods - kefir, kombucha, and raw sauerkraut. As long as I eat one of those with each meal, no GI trouble at all.
It took some time after returning from Germany to get to where I am, that wasn't the end of the road, but I trusted the photons and did not add in a bunch of other stuff aside from detox and KPU.
Again, this is what worked for me. Take from it what you feel will help you. If you've done abx for 7 years and are not reaching health, I would drop it for a time and try something different be it rife, photons, or whatever. You can always go back to abx.
sixgoofykids.blogspot.com
Pilates and meditation were recommended. I find riding the bike for now has been useful and I do very minor meditation. I did see a Chiropractor, but the issues I was seeing him for were regarding a flat foot on my left side. In that respect I was out of whack as well, and it was causing knee problems. The issue in the end was really just getting someone to create an appropriate support. No one ever could. I went through many expensive pairs of custom pieces and finally decided to start making my own out of over the counter ones. I take them, they tape slices of paper to areas until it feels right. It takes hours and God I hate it, but it's helped more than all the thousands of dollars spent on people who "specialize" and still couldn't get it right.
I'm also diagnosed with Crohn's Disease. I'm absolutely certain that it's the result of the illness as a whole and not a separate entity. It responds well when all the other symptoms do as well. Tetracycline therapy has significantly improved it over the years. I'm glad you're doing ok in that respect because it can be painful and frustrating for many.
Erica kept me up to date on your blog regarding your trip and the processes you went through. Some of your details here though may be useful to me, so I'm taking note.
I appreciate your taking the time to offer this information.
quote: sammy1 Abx imho won't cure you. Try salt c and rife. It has saved my life.
Yeah we've covered that in the thread. I'm very glad to hear it's helped you. It's in my notes.
quote: ticked-offinNc Lordy MBlue,
Seems like you have improved, pets and furniture huh? [Smile]
I have, in minor ways -- at least I call them minor. It took me a year debating with a therapist whether I'd get a cat. I mean seriously, who does that? Oh...Lyme patients, that's who. Such tiny choices (at least to me) make such a big impact and are hard to adapt to and tolerate. I'm working hard though.
quote: ticked-offinNcI am really sorry you feel stuck, I wish I had an answer for you. But I dont think I have ever been at your level my whole life.
You are intellegent, have attention span, organizational skills, respect and kindness toward others.
I cant imagine the things you will accomplish and do when you do get better.
You have already left your mark in the world, and you are still young.
Thank you for the kindness. I just really am so tired of this process. I mean it's one thing to be stuck for a month, a year, or even 5, but almost an entire lifetime? What a curse. One thing I will never admit is that this disease made me a better person. You'll never hear me say that. I've destroyed so many relationships and hurt so many people. You know why? Because my roommate (Lyme) takes control of my mind from time to time (Less so with antibiotic therapy over the years), but enough so that the depression, rage, mania, and incredibly disrespectful behavior and comments made me a massive burden to those who matter most. Thankfully, as I improved in some areas (I have an awful long way to go cognitively and mood wise -- medications are what keep me somewhat (if that) stable. I just want to be free. I feel like a prisoner who was sentenced for a crime he didn't commit, and now he must sit in his cell with all his law books in order to solve an injustice. But sadly, with Lyme there is no one to blame. With the co-infections and other comorbid states -- I can't plead my case and somehow overturn the "wrong" that's been done -- because there was no wrong. It was just...events that I happen to be there for -- like some of you. In other cases though, a doctor missing a rash or denying treatment is one thing -- but I'd been sick long long before that. Ignorance, that's all I plead and trust me, if you ever plead ignorance in a court of law, they'll say "Just because you didn't know, doesn't mean you're not still subject to the consequences." A police officer told me that once. Oh how true. So that's a little venting!
quote: ticked-offinNcEver think of seeing another LLMD for just a consult?
I've seen three. Of course the first one was highly conservative. The second would have missed a variety of co-infections because she said (and I quote) "I don't run testing. Why would I test you for something I know you already have?" My response: "Uh, but what about the things you don't know I have that may create a more complicated picture?" She agreed to run testing but would not sign off on the labs I chose. Instead she used Quest. She said the treatment plan was simple. 90 days of Ceftin at a specific dose. If it didn't work, another 90 days at double the dose. If that didn't work, 90 days and again double that dose. If in the end none of that works, IV Rochepin. That was what she offered. She told me to change my diet, reduce my stress, and explained a few supplements to me. It just wasn't sensible, so I stayed with the first guy until I could get up the nerve and finances to see someone much more experienced. When I finally did, it costed me thousands and thousands of dollars. This illness - since I originally fell ill as a child -- has cost well over 5 million dollars. Fortunately I've only paid at best 50-75K out of pocket. Sick and broke! The typical story.
In the end, I may have to see another specialist, but I'll cross that bridge when I get there.
quote: ticked-offinNcJust look at all thr responses you get when you post, people here really appreciate who you already are.
And I seriously am grateful and appreciate all the information everyone has given me. Thank so much.
quote: WildCondor Metallic,
Have you ever done larger doses of Flagyl? I mean something like 750 mg 4x per day 4 days on, 3 days off, then pulse something like Bicillin 1.2 MU 3-4x per week along with 2,000 mg Biaxin with it.
I haven't. It's an idea though. I've used all those meds at lower doses of course and say no results, but a high dose could make a difference I suppose. I'll bring it up at my appointment.
quote: WildCondorI would do all of those plus get in a monoplace Hyperbaric chamber for 30 dives (to start) if you can afford it.
That was brought up by OXbabe as well, but it's just not feasible financially. My monthly limit financially -- with stretching myself to the absolute limit is $500. I will -- just in case I can find a way -- remember this though, because I'm well aware it could work.
quote: WildCondorThat protocol blasted my Lyme nice and hard and I never relapsed afterward. I would give Levaquin or Cipro in higher doses than you initially took another chance too, and combine them with Biaxin possibly. Hang in there...something will work. [Smile]
The Cipro/Levaquin idea with high dose Biaxen/Plaquenil are a potential idea to try since we did not do high doses. At most I used 500mg of Levaquin orally with some IV Levaquin for one a few days. Biaxen never went above 1,500mg per day and Plaquenil always stayed at 400mg total per day. So, I'll bring these up too. I've brought up the Levaquin, but there is a bit of concern there even doing it at the regular dose.
I came up with an idea -- or remembered should I say -- that dosing really "dose" have a lot to do with how a medication does or doesn't work and this brought me to the Cycline issue. What if the reason Minocycline, Doxycycline didn't work was because the actual amount of medication (even with high absorbtion) wasn't enough compared to the Tetracycline, which I was taking at 1,500mg and 2,000mg at one point? It's possible that the theory of lower dosing doesn't hold true in all cases? Just a hypothesis with no real value, but it was on my mind.
quote: Robin123
To answer you, Lou, yes, it's oral clindamycin. 150mg 2x/day now. 4x/day when I started.
And yes, one researcher told me it could also be hitting mycoplasma.
I don't think I have any other co's, so don't know what else clinda would be hitting. It's my Lyme symptoms that it has been treating - fibro pain to zero, joint pain down I'd say about 80%.
Remember, I am also diagnosed with Mycoplasma, but it's the Pneumoniae type.
quote: Now back to Mike: I like sixgoofy's suggestions to look more broadly. We have reports, for example, from Lyme patients going to India for stem cell injections and they are just about 95% better.
So I encourage you to take a look at all treatments people are trying, not just abx.
I'm keeping an open mind and piecing together what I think is probably the next best possible option. So yeah I'll certainly look into it all.
quote: CD57
[quote]Metallic I am soooo impressed with your record keeping. You have one of the best LLMDs in the county. What does he say about all of this?
He said, I'm sorry you feel so discouraged but we're doing what we can, and when we start running out of things, we've gotta take the next logical step, and that's preparing your body for IV antibiotic therapy. I told him I felt that we should explore some other lower risk treatments first, and I mentioned a few. He shrugged and said that when I was ready and didn't feel so burned out he'd try. I told him to consider the VFEND during this break period and he shrugged and said "Ok, I'll write you a script for 2 weeks, but that's it. If it's going to work it'll start in that period and if it shows results will continue it." I then pleaded with him for a prescription of Tetracycline. He absolutely hates Tetracycline. He favors Mino and Doxry/Doxycycline. However, Tetracycline is the only one that ever made a dent. I didn't have to plead, but I wanted his consent so I'd feel I was at least following orders. I could easily have gotten the prescription another way. I'm blessed with a Primary who was open to the research I presented, UOS, as well as my systematic method of trying to figure out which drugs are doing what. That pleased her, so she's written everything for me instead of having my LLMD do it Living in MA, I can't get coverage for NY prescriptions, so it was perfect for me.
One other thing that bothers me is the fact that he "Is" one of the best, if not the best. I'm aware of a few others who match his skill but I'd really hate to waste part of my 500$ spending limit just making a flight!
quote: CD57I don't have strong herxes to meds either, and while I am better than when I started out 3 yrs ago, in some ways I am much worse (CNS/psych). I now have permanent damage acquired ON treatment (go figure). My LLMD has suggested that my immunological impairment is a reason for my lack of strong herxing and thus improvement. I don't know what I have to do to boost this, but I will do anything. I am trying to look into IVIG but don't know if that will help. I reintroduced LDN after quitting it so we will see if that does anything.
What does your gut tell you is your biggest issue?
Immunological impairment could mean you might need a Lyme Literate Immunologist. However, before that I'd try Transfer Factor Plus, with continual high dose antibiotics (Preferably those known to "not" affect white blood cells or do anything else to the immune system.). Immune stimulation and modulation comes in a variety of forms, but light to moderate exercise for 20-30 mins can help increase immune response when combined with high dose antibiotics, LDN, Transfer Factor. The exercise part works for me. The Transfer Factor would have likely made a massive impact had I known at the time that I needed high dose antibiotics in combination. I felt "really really" well on Transfer Factor Plus for about one week, but this was before any other treatment. The progress disappeared though. I've also concluded based on my experience that Transfer Factor Plus should not be taken daily. It should be pulsed. Perhaps 5 days on, 5 days off etc. The dose of TF should also be very high, unlike what the package says. It should be at least 9 pills per day taken three times apart. Unfortunately the product is expensive, but with pulsing it, costs would reduce substantially. I think I may return to the TF again as another possibility when I get back on the antibiotics. Cost is about $50 per bottle with 60 capsules. Divide 60 by 9 and it'll only last about 6 days per bottle. So per month, it's about $200 I would think. My concern is some people don't respond though, so it's a risk.
My symptoms do decrease during exercise, which leads me to believe that endorphins combined with anti-inflammatory actions (modulation) help the immune system. IVIG could very well be helpful to you if it really is your immune system. You may need testing further to see if it's necessary though because there are risks of reaction. It's worth investigating though. The LDN was a good idea. My LLMD says combining LDN with a product called "Pekana" which is a Homeopatic treatment helps a lot of his patients. Combined they work much better than either alone he said.
I think the biggest issue is probably Lyme Disease combined with Bartonella. However, since treating the Babesia has helped so immensely, I'm thinking it may be that I'm not progressing because of the Babesia. So, knocking one infection down at a time or together in an order makes sense to me. My immune system is normal aside from dysregulation with inflammation, but the inflammation isn't "insane." It's more along the lines of a low level inflammation that creates a lot of these symptoms, and if the proper infections are targetted, the triggers removal will decrease the inflammation.
[ 11-22-2009, 01:13 PM: Message edited by: METALLlC BLUE ]
-------------------- 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.
merrygirl
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Member # 12041
posted
I didnt read all the resposes so sorry if i missed something.
maybe its time to think outside the lyme and co's box.
maybe thats not whats bothering you anymore.
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METALLlC BLUE
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quote: ColtmanHave you tried immune modulation?- this is very poorly researched subject in US , but very interesting one and unlike alternative treatments it has plenty of clinical research(done outside US ) backing it
LDN is a first thing you can try -easily accessible in US , it is also interesting that it uses different mechanism than other immune modulators -it acts on opiod receptors, it seems help MS people
I tried the LDN but had awful side effects. I may return to it in the future. It's a possibility.
quote: coltman Then there is cycloferon, polyoxidoniy ,licopid (and many others but those are most mainstream -available trough some overseas pharmacies) They have very safe profile and are used for in wide range of applications ( HIV, TB, hepatitis, other chronic and sometimes acute infections of bacterial and viral origin)
Interesting, I'd never heard of those drugs. Thanks for mentioning them.
quote: I do suggest to stay away from IVIG and interferons though as unlike those listed above they directly introduce exogenous cytokines into the system, this approach has has high probability of negative side effects. The drugs listed above act on signaling pathways - so cytokines are produced by your own body .
Yeah, I mentioned the IVIG thing just above your post to CD57. Risks, but... perhaps she can benefit from your post as well. She's doing the LDN now, and I offered her a few ideas. I'm not planning to do IVIG as I don't think my problem requires that, but I do think immune modulation could help my symptoms. It's not the "increase" part I need so much as modulating and balancing inflammatory responses vs infection fight and other efforts of the immune system. Then again, I heal slowly too, but I think that's also caused by low level inflammation through the body.
-------------------- 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.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: MerrygirlI didnt read all the resposes so sorry if i missed something.
maybe its time to think outside the lyme and co's box.
maybe thats not whats bothering you anymore.
I'm confident it is a big part of the problem still, given I'm responding to the Malarone and the Tetracycline still, as well as a partial response to Doxycycline, a "minor/moderate" herxheimer reaction to Bicillin, and of course the enormous herxheimer reaction that takes place only 5 days into treatment with the Bactrim.
It's highly unlikely the Malarone is reducing symptoms by any other mechanism than killing something. The Tetracycline and Doxycycline are subject to all the usual debates about pain receptors, reducing inflammation, as well as their antibacterial properties. I can say that both Doxy and Tetra caused strong (and Tetra still dose) herxheimer reactions about 1 1/2 weeks after starting, and then a decrease in symptoms takes place at 12-14 days. The Bactrim could have been causing side effects leading to such a powerful response that I attribute as a Herxheimer reaction. I could be wrong though, since it's subjective -- but it sure did feel like a Herxheimer. All the cognitive, psychiatric, joint aches, digestive bloating, palpitations etc. All potential side effects, but you don't usually start improving in the symptoms you started with after only 7-9 days.
I mentioned earlier however that I can't take Bactrim since I had red-man syndrome, and Dorxy doesn't make sense to try right now since I stopped responding within one month of use.
I'm confident we're dealing primarily with infectious diseases, especially with all my positive tests, however -- that doesn't mean I'll avoid going outside of this box if I don't find progress with any known options. I just don't think right now is the time to move away from them.
Thanks for reading my post and offering your thoughts. It helps me to clarify what I really think I need to focus on. If the focus turns into a dead end, then I'll change the lens.
-------------------- 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.
quote:Originally posted by METALLlC BLUE: I'm a perfect example of Chronic Persistent Lyme inspite of "more than adequate" antibiotics.
It wasn't until 2009 though that I explored a lot of complex protocols. No changes took place, even with those.
You seem tried lots of stuff but its really hard to tell whether it was combined or not .It is strange you want get back on tetracyclines (and not doxy or mino) as tetracycline is practically obsolete -it has worse bio-availability , worse action, worse spectrum , worse side effects
There is also a lot of clutter meds listed (psych meds pain meds ,etc) which do blurry the picture
p.s. Hmm I had impression Dr.H is fairly aggressive (if it same Dr H I think of) , I would think he would use combo abx
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quote:He said, I'm sorry you feel so discouraged but we're doing what we can, and when we start running out of things, we've gotta take the next logical step, and that's preparing your body for IV antibiotic therapy. I told him I felt that we should explore some other lower risk treatments first, and I mentioned a few.
I don't see how you have any other serious options left. Nothing has worked.
How come you haven't been on long term Rocephin like so many others? (If you already addressed this, and I missed it, my apologies).
But my question from way up the thread was, how do you know if you're getting a response when you have SO many bacteria, causing SO many sx? You could knock out, say, RMSF, and still feel awful because of the others.
My guess would be that your immune system is very compromised. Abx work by keeping the bacteria from replicating so that your immune system can kill them off. But obviously if your immune system isn't up to the task, the bacteria live on. Or are killed very, very slowly. (that would explain your lack of response in a "normal" time frame).
I don't know much about the bactericidal abx, but I would think that even they rely on a good functioning immune system.
As I go through this journey, I find that Babs is a much bigger problem than is usually thought. But the babs should be the easiest to directly treat since it's a different bug and different kind of drug.
Since it's blood borne, it can be attacked much easier than Lyme which hides in the tissues. But 4 months of Mepron isn't necessarily enough.
The anemic condition babs causes of too few usable RBCs must make every kind of abx less effective, as well as suppressing the immune system. It will also make you feel fatigued and make any kind of physical effort harder.
Dr H should be a leading LLMD in the field. Does he consult with other LLMDs about your case? You are very unusual in that you have proven multiple infections.
You really should be a published case history of how the IDSA protocols do not work. I mean that in all seriousness. I wonder how the IDSA would characterize you. All in your head?
Have you tried living someplace else for a few weeks just to eliminate environmental factors? Maybe some of your pain is from living in Springfield!
James
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METALLlC BLUE
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quote: coltman
You seem tried lots of stuff but its really hard to tell whether it was combined or not .It is strange you want get back on tetracyclines (and not doxy or mino) as tetracycline is practically obsolete -it has worse bio-availability , worse action, worse spectrum , worse side effects
Yeah, My LLMD prescribed Mino and Dorxy for quite awhile. Mino showed no results and Dorxy showed results in the exact time frame that Tetracycline dose -- including the Herxheimer reaction. The problem is, it stopped working quickly. I've done probably 8-10 cycles of 6-8 months each, of Tetracycline and it's never stopped working until it wears out at the 6-8th month marker. When it stops, I start back up two months later and it works again. The problem is, it only raises my function by about 10% at best. 10% is better than nothing right now and I need some relief.
quote: coltman There is also a lot of clutter meds listed (psych meds pain meds ,etc) which do blurry the picture
p.s. Hmm I had impression your LLMD is fairly aggressive (if it same LLMD I think of) , I would think he would use combo abx.
Yes, it's the same doctor you're thinking of. Highly aggressive and we've done multiple combinations. That's why I'm concerned.
quote: James I don't see how you have any other serious options left. Nothing has worked.
A lot of options were given in the the thread, so I feel more encouraged by that.
quote: JamesHow come you haven't been on long term Rocephin like so many others? (If you already addressed this, and I missed it, my apologies).
I covered it earlier. My prior LLMD didn't prescribe IV for 99% of his patients (His words), but in my case I convinced him 3 years into treatment to go with the IV. I didn't know much about Lyme back then. I didn't know I had co-infections either. He gave me IV Vanco. I told him it seemed strange to do that and not IV R. He said "IV V" is better. I accepted his statement.
quote: JamesBut my question from way up the thread was, how do you know if you're getting a response when you have SO many bacteria, causing SO many sx? You could knock out, say, RMSF, and still feel awful because of the others.
We're confident the RMSF is gone. It's of course obvious that multiple infections can cause multiple symptoms and he and I discussed that at length. I noted, based on other patient and LLMD reports, that Babesia causes "exaggerated" symptoms in the form of immunosuppression, breathing difficulty, higher fevers, and night sweats." When we put medications together, we tried to carefully do them one at a time and to use specific things for specific diagnosis. For example the Malarone. When Night Sweats and Breathing improved, but nothing else (and it only improved when Malarone was added) we can presume it's Babesia or some various parasite. Bartonella tends to cause more exaggerated symptoms of the psychiatric and G.I. system, including bloated belly, accumulation of fat in uneven distribution that doesn't respond to exercise or dietary changes, as well as insomnia. Many of these symptoms easily cross over to other infectious diseases (So do the Babesia symptoms). We can't confirm anything definitively.
quote: JamesAs I go through this journey, I find that Babs is a much bigger problem than is usually thought. But the babs should be the easiest to directly treat since it's a different bug and different kind of drug.
Since it's blood borne, it can be attacked much easier than Lyme which hides in the tissues.
The anemic condition babs causes of too few usable RBCs must make every kind of abx less effective, as well as suppressing the immune system. It will also make you feel fatigued and make any kind of physical effort harder.
I'd had anemia too in the past, so I think we can presume that adds a little more circumstantial evidence to the diagnosis. There is no gaurantee that any assumption we make that we'll target exactly that alone.
quote: JamesYour LLMD should be a leading LLMD in the field. Does he consult with other LLMDs about your case? You are very unusual in that you have proven multiple infections.
Sadly my case is actually quite usual given the context. Prior steroid use, allergies, multiple misdiagnosis etc. I'm sure he'll consult if he finds it necessary. He does refer patients for certain issues when necessary. If I have to see another LLMD at any point, I'd do that too.
quote: JamesYou really should be a published case history of how the IDSA protocols do not work. I mean that in all seriousness. I wonder how the IDSA would characterize you. All in your head?
They don't care. Every argument I've made to them (and I have) they've said:
"Lab Lacks credibility, must be false positive, lab error, not Lyme since you didn't recover with adequate antibiotics. Test can remain positive even post-infection, etc. Actually their list of rebuttals are so long and so convoluted that no matter which way you go and no matter how much proof, they'll find a way to deny it as they have thus far in the general community.
For those rare rare cases of ongoing infection inspite of antibiotics, they call it "refractory" Lyme Disease and say it's extremely rare. What confuses me is that if Chronic Lyme doesn't exist, then why do they state that refractory Lyme exists even in "rare" cases? The IDSA has never made sense, nor answered these questions with satisfactory answers.
I showed all my studies on persistent infection (I've got over one hundred -- which equals about 1,000 pages), and they say "They're not double blind placebo controlled." So they dismiss it as though it's meaningless. That's absurd.
quote:Have you tried living someplace else for a few weeks just to eliminate environmental factors? Maybe some of your pain is from living in Springfield! [Wink]
James
That's amusing James. I do in-fact think the negativity of the city isn't helpful, but as far as it physically causing illness because of pollution or other chemicals, it doesn't make a difference where I go. I've gone away for months at a time to different places, including to Italy for 3 months. Nothing changed.
[ 11-22-2009, 01:14 PM: Message edited by: METALLlC BLUE ]
-------------------- 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.
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Hey Metallic, I'm so sorry for all the suffering you've endured. That you're still sane is a testament to your incredible character.
Knowing what I know now, my advice would be to Rife. It's incredible and has allowed me to discontinue all pharmacuetical meds. Even after I quit abx I was still treating babs with Mepron - when my insurance ran out I freaked - no way could I afford 2 bottles of Mepron every month and I was still really sick with babs symptoms.
I don't know why it took me so long to try my machine on my babesia infection, and I'm sorry it did. Just like Lyme, my machine has blasted my babs into oblivion. It makes me sick when I think of the thousands of dollars I spent just on antimalarials alone - and all that time all I really needed was my $3oo Dan Tracy.
One of the other benefits of Rifing is that I'm not in a constant herx like I was with abx - I have more control. I usually Rife on Friday morning and herx Saturday and Sunday. I may still feel a little rough by Monday but I'm functional. The rest of the week is gravy.
All the excuses you're giving for not using your machine are the same ones that I used. I say quit with all that and give it a whirl - I don't think you'll be sorry.
Best of luck to you with whatever road you choose to take and I truly hope you get much better soon.
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
lymielauren28, have you found that Babesia is easily knocked down using frequencies?
I have treated this co-infection early on using frequencies and it all but disappeared for many months.I t may even be totally gone.
I am asking because it almost seemed to be too easy to knock out, and since I basically hit it a couple times and it was gone, I wonder if this is common or if it was some huge coincidence.
I think metallic blue is trying to limit the different approaches in an organized way, so effectiveness can be determined. A good idea in general. It gets confusing piling one thing on top of another.
At least that is how it appears to me.
Interesting reading. Lots of experience being imparted in this thread.
Dan
Posts: 2924 | From Minnesota | Registered: Aug 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by METALLlC BLUE: [QB] Certainly, that's what we've talked about through this thread. Systematically exploring all the options until we move to the next stages. You and I shared the same doctor (I am not aware if you still see him), and so we've done things in a consistent pattern and constantly strived to move into new areas. Currently we're seeing if a drug called VFEND might work. I'm on it now, -- my second day -- and we're hoping to see results within two weeks. It's an anti-fungal drug but also, possibly, may have strong effects on Lyme and other bacterial infections. It's a weak study, but the study done on Diflucan was the "possibility" factor that led me to convince Dr. H to give it a shot. To do it meant I'd have to stop all treatment which is exactly the point I was at. I needed a break. I've been going full steam for 7 years and my mind is burned out. A lot of factors have been going on in my life right now that have discouraged me and so I really needed to pull myself together gradually and come here to find out "all" the things that are available. You know Dr. H is well versed in a lot of stuff, but once he starts hitting a wall and gets stuck, he'll try to experiment. Experimenting means you're all alone really.
I still have him look at my blood work for thyroid meds. I've cut down a lot on thyroid meds, but still take them. He is open to trying other things and I think it's good to take the risk. If it's not working, you will know.
quote: I'm glad you've continued to feel better than you were.
It's nice to be living life again and not to have to think about or deal with Lyme.
quote: Pretty basic routine, I'm sure you're happier not being pumped up on drugs.
For sure! These are all supps, too, nothing is for infections. I still use the Bionic just to be sure it doesn't all come back ... kind of a safety net for me.
quote: Humaworm? Is that available by prescription or another way? I know about Dr. Hulda Clark's routines to some extent, and of course keep that in the back of my head for down the road. Dr. Natura cleanse, What is that?
Humaworm is available at www.humaworm.com . Parasites were a big deal for me. I really shot forward in my treatment back when I was on abx when I treated parasites and bartonella. Dr. H and I didn't know which one helped the most.
Dr. Natura is a cleanse kit that you buy off the internet. It has some herbs you take in the morning. Then a fiber blend. Then a tea you drink at night. Very cleansing. Good herbs.
quote:Pilates and meditation were recommended. I find riding the bike for now has been useful and I do very minor meditation. I did see a Chiropractor, but the issues I was seeing him for were regarding a flat foot on my left side. In that respect I was out of whack as well, and it was causing knee problems. The issue in the end was really just getting someone to create an appropriate support. No one ever could. I went through many expensive pairs of custom pieces and finally decided to start making my own out of over the counter ones. I take them, they tape slices of paper to areas until it feels right. It takes hours and God I hate it, but it's helped more than all the thousands of dollars spent on people who "specialize" and still couldn't get it right.
I'm also diagnosed with Crohn's Disease. I'm absolutely certain that it's the result of the illness as a whole and not a separate entity. It responds well when all the other symptoms do as well. Tetracycline therapy has significantly improved it over the years. I'm glad you're doing ok in that respect because it can be painful and frustrating for many.
Erica kept me up to date on your blog regarding your trip and the processes you went through. Some of your details here though may be useful to me, so I'm taking note.
I appreciate your taking the time to offer this information.
I'm happy to.
A good pilates instructor can help you build the muscles properly to help with the foot problem. Not just any old mat class, but a teacher who has experience and training to work on the reformer. Not saying it will fix it 100% or quickly, just that it will help you to build the muscles up how they're supposed to be. Chances are that you stand on the inside of your foot. If you stand barefoot you will probably notice that you don't stand evenly on the ball of your foot ... you most likely roll to the big toe side. Try to distribute the weight evenly and that will help. Working on the reformer helps to build the muscles in the area while having the weight distributed properly.
Another way to see what I'm talking about is to look at your achilles tendon ... it should be perpendicular to the floor. Concentrate on holding it that way to exercise your foot in the proper position.
I have a family history of GI issues going back at least three generations. I agree that Lyme certainly made it worse, and I'm working on healing 100% in that area, but I also know it's genetically a weak spot for me. I've had a ton of improvement, like I said, eating fermented foods, but last night for dinner I didn't eat anything fermented, so had poor digestion again. No pain or other problems, just doesn't digest completely. But, I think you're right, it gets so much worse, painful, and inconvenient when you're sicker.
I really hope you find the right treatment combination to get you well. Seven years is a long time.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I am in awe at you and all you've done, all you've tracked and all of us that you've helped.
I've still had my best results with homeopathics. If you can find a good person it can, IMO target from a different angle than the abx. Deeper. My homeopathic herx is always bigger than any I've had on abx.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Hey Bergy,
It may have been a huge coincidence for you and a lucky one at that! I started Rifing for babs in June - it's almost the 1st of October and I still have to Rife for it. It does keep coming back. I'm not sure if I'm rifing often enough for babs and that may be part of the problem. I do it once every week or so and sometimes wait even longer.
This is because I rife for it and all symptoms are gone within an hour or so - I don't herx anymore just feel better after doing it. So I'll feel ok and babs free for a week or so and then the symptoms come back and then I rife for it again. I know one guy who beat babs using rife but he did it every day for about 3 weeks, using his machine about 25 minutes a day.
This may be what it takes to really kick it if you have a heavy load. Plus we all know that babs replicates much faster than Lyme.
My babs frequencies are 20,27 and 570. I also just added in 76 which some say hits babs. It definately hits something because both times I've used it I've had a reaction WHILE using it, which is unusual for me. I typically don't feel anything when sitting in front of my machine. The only other frequency I've felt a "hit" on while using it was 20 and 612.
I do understand that Metallic is trying to systematically eliminate what doesn't work and figure out what does, and i do respect that. It's just very hard NOT to push a treatment on others when YOU KNOW it works and works better than anything you've ever tried at that. Good thing I don't have a bullhorn haha! I've told many of my out-of-state Lyme friends that haven't rifed yet that they're lucky I don't live closer - I'd strap them down in front of my machine and make them use it, LOL!
It's just something I feel so strongly and passionately about because it's been so effective and miraculous for me. I also know that it may not be as effective for the next "lymie" - we're as different as our symptoms as far as what works and what doesn't...
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
I have found that frequencies works well for those who detox well, and not so good for those who do not.
This is the same result for most any treatment, those who detox well get better, and those who do not, suffer.
Metallic Blue may be one who cannot shake the toxins, so it is a difficult proposition, no matter what treatment is used.
I would guess that is the most likely reason for nothing working, even more proven treatments.
Dan
Posts: 2924 | From Minnesota | Registered: Aug 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: lymielauren28
Hey Metallic, I'm so sorry for all the suffering you've endured. That you're still sane is a testament to your incredible character.
Knowing what I know now, my advice would be to Rife. It's incredible and has allowed me to discontinue all pharmacuetical meds. Even after I quit abx I was still treating babs with Mepron - when my insurance ran out I freaked - no way could I afford 2 bottles of Mepron every month and I was still really sick with babs symptoms.
I don't know why it took me so long to try my machine on my babesia infection, and I'm sorry it did. Just like Lyme, my machine has blasted my babs into oblivion. It makes me sick when I think of the thousands of dollars I spent just on antimalarials alone - and all that time all I really needed was my $3oo Dan Tracy.
I remember when you messaged me looking for information. It was May 17th 2008 thru March 24th of 2009. Sent me private messages talking about "The Beatiful Let down" and some things we had in common. You wrote telling me about Dan Tracy, and that you ended up having to wait 6 more weeks for a machine than you'd hoped. You told me you'd keep me up to date etc. You asked me about Italy, and that you'd visited when you were 18 years old. In the end you told me you were extremely confident in the treatment. I had in-fact read Bryan's book, Later you were willing to help me with the Zithromax, if I remember but were unable to find the bottle." In the end I did get extra Zithromax.
So, I kept track, I didn't forget. So tell me now more about your progress.
quote: lymielauren28 One of the other benefits of Rifing is that I'm not in a constant herx like I was with abx - I have more control. I usually Rife on Friday morning and herx Saturday and Sunday. I may still feel a little rough by Monday but I'm functional. The rest of the week is gravy.
All the excuses you're giving for not using your machine are the same ones that I used. I say quit with all that and give it a whirl - I don't think you'll be sorry.
Best of luck to you with whatever road you choose to take and I truly hope you get much better soon.
You provide a convincing argument that I've been trying to avoid for a long time. It just seems rather risky to turn to the IV only to wait for a treatment that may show no results, -- and at best, only improve my quality of life temporarily and thus require retreatments with uncomfortable IV or other sources.
I'm thinking very carefully about my next step Lauren. I "might" take a risk and focus on parasites, and Rife. I have to think over it and keep refining it. That's where you guys are coming in handy. Someone asked me above what I felt "In my gut" was this: "I think the biggest issue is probably Lyme Disease combined with Bartonella. However, since treating the Babesia has helped so immensely, I'm thinking it may be that I'm not progressing because of the Babesia. So, knocking one infection down at a time or together in an order makes sense to me. My immune system is normal aside from dysregulation with inflammation, but the inflammation isn't "insane." It's more along the lines of a low level inflammation that creates a lot of these symptoms, and if the proper infections are targetted, the triggers removal will decrease the inflammation.
It seems clear to me, that if Rife works as intended (and as reported by many hundreds of people that I've crossed), that I may be able to do this sooner rather than much later. I think considering Parasites can be done before then. It's been an issue many other people have brought up after reading my case. For whatever reason, it very well could be that, so I'll pursue it.
quote: D Bergy lymielauren28, have you found that Babesia is easily knocked down using frequencies?
I have treated this co-infection early on using frequencies and it all but disappeared for many months.I t may even be totally gone.
Can you tell me which frequencies you used, duration between sessions (i.e. every week), dose (time frame i.e. 2 mins) and how long it took before you saw results? Also, can you tell me the frequencies for the specifics which you used your treatment? Did you use it for Lyme, Bartonella, Babesia, Parasites, Viral, Organ/Lymph, whatever? I'm asking these same questions to Lauren.
quote: D BergyI am asking because it almost seemed to be too easy to knock out, and since I basically hit it a couple times and it was gone, I wonder if this is common or if it was some huge coincidence.
I think metallic blue is trying to limit the different approaches in an organized way, so effectiveness can be determined. A good idea in general. It gets confusing piling one thing on top of another.
At least that is how it appears to me.
Interesting reading. Lots of experience being imparted in this thread.
That's exactly right. Lauren knows that though, because she's been through it to some extent. Basically the idea is to pick an approach that is reasonable, low risk compared to other therapies, has the potential for a higher rate of success over other therapies, and can be done in a "shorter" time frame. Ironically, if you look at the whole picture of my case, Bartonella treatment would be reasonably short, but the risk is moderate to high. The time frame is 3-4 months continous, with a potential repeat cycle. Can Tetracycline or a maintence drug be used while on Levaquin? The parasite therapies can be used with Rife, so that's a possibility. I'm aware Bartonella or an oranism "similar" can be treated to a much lesser degree with Rife, but I don't know the latest data.
I think was made this thread so useful was how comprehensive we're making it. It's not serving just me, but anyone who has come to this place. It gives people an idea how to proceed -- sort of a road map, and ideas of what it takes in the worst possible situations to advance. I'll probably make a list near the end of the thread discussing in brief paragrapths what each person has said for a potential treatment regimen. Simplified, it may seem easier.
quote: sixgoofykids
I still have him look at my blood work for thyroid meds. I've cut down a lot on thyroid meds, but still take them. He is open to trying other things and I think it's good to take the risk. If it's not working, you will know.
It's nice to be living life again and not to have to think about or deal with Lyme.
For sure! These are all supps, too, nothing is for infections. I still use the Bionic just to be sure it doesn't all come back ... kind of a safety net for me.
Humaworm is available at www.humaworm.com . Parasites were a big deal for me. I really shot forward in my treatment back when I was on abx when I treated parasites and bartonella. He and I didn't know which one helped the most.
What your LLMD's perspective been -- more specifically -- when you've discussed the directions you've taken. How do you know parasites were such a serious part of your situation? Do you know which type of parasites? Also, how long did you treat them for, and with what treatment, and what dose? Bartonella: How did you handle that? How many treatments did you throw at it, and which drugs or other therapies were used?
quote: sixgoofykids Dr. Natura is a cleanse kit that you buy off the internet. It has some herbs you take in the morning. Then a fiber blend. Then a tea you drink at night. Very cleansing. Good herbs.
I appreciate your taking the time to offer this information.
I'm happy to. [Smile]
A good pilates instructor can help you build the muscles properly to help with the foot problem. Not just any old mat class, but a teacher who has experience and training to work on the reformer. Not saying it will fix it 100% or quickly, just that it will help you to build the muscles up how they're supposed to be. Chances are that you stand on the inside of your foot. If you stand barefoot you will probably notice that you don't stand evenly on the ball of your foot ... you most likely roll to the big toe side. Try to distribute the weight evenly and that will help. Working on the reformer helps to build the muscles in the area while having the weight distributed properly.
Another way to see what I'm talking about is to look at your achilles tendon ... it should be perpendicular to the floor. Concentrate on holding it that way to exercise your foot in the proper position.
I have a family history of GI issues going back at least three generations. I agree that Lyme certainly made it worse, and I'm working on healing 100% in that area, but I also know it's genetically a weak spot for me. I've had a ton of improvement, like I said, eating fermented foods, but last night for dinner I didn't eat anything fermented, so had poor digestion again. No pain or other problems, just doesn't digest completely. But, I think you're right, it gets so much worse, painful, and inconvenient when you're sicker.
I really hope you find the right treatment combination to get you well. Seven years is a long time.
You likely won't hear about me jumping into a Pilates routine anytime soon, however, it'll be on my mind. My body isn't in poor shape like it was. I was able to do weights and bike riding to build everything back up. However, the stretching and meditative aspect of Pilates appeals to me, so I'll think about it. Erica will probably give me insight into it and convince me somehow. I'm really glad you're feeling so much better. I know you also had a very long term illness. Being sick an entire lifetime has been hell on earth for me. The suffering has been unbearable. The 7 years of antibiotic therapy came way too late for me. I'm optimistic I can win this though, and I'm glad you're winning yours.
quote: peacemama M,
I am in awe at you and all you've done, all you've tracked and all of us that you've helped.
I've still had my best results with homeopathics. If you can find a good person it can, IMO target from a different angle than the abx. Deeper. My homeopathic herx is always bigger than any I've had on abx.
A lot of people have recommended Homeopathics. They aren't in conflict of Rife therapies, are they Lauren/Bergy? I'm thinking of giving the LDN another shot too, and possibily Rifampin (even though my Liver didn't like it). I can test it and see what my blood work does this time. Can Rifampin be mixed with Levaquin? Obviously the idea is to go after Bartonella.
quote: lymielauren28
Hey Bergy,
It may have been a huge coincidence for you and a lucky one at that! I started Rifing for babs in June - it's almost the 1st of October and I still have to Rife for it. It does keep coming back. I'm not sure if I'm rifing often enough for babs and that may be part of the problem. I do it once every week or so and sometimes wait even longer.
What are the symptoms that you experience prior to treating it? When it returns, what do you experience?
quote: lymielauren28This is because I rife for it and all symptoms are gone within an hour or so - I don't herx anymore just feel better after doing it. So I'll feel ok and babs free for a week or so and then the symptoms come back and then I rife for it again. I know one guy who beat babs using rife but he did it every day for about 3 weeks, using his machine about 25 minutes a day.
This may be what it takes to really kick it if you have a heavy load. Plus we all know that babs replicates much faster than Lyme.
My babs frequencies are 20,27 and 570. I also just added in 76 which some say hits babs. It definately hits something because both times I've used it I've had a reaction WHILE using it, which is unusual for me. I typically don't feel anything when sitting in front of my machine. The only other frequency I've felt a "hit" on while using it was 20 and 612.
How long do you do each frequency? (i.e. Dose). And you perform the cycle once per week you said. I asked Bergy above: "How long it took before you saw results? Also, can you tell me the frequencies for the specifics which you used your treatment? Did you use it for Lyme, Bartonella, Babesia, Parasites, Viral, Organ/Lymph, whatever? I'm asking these same questions to Lauren.
quote: lymielauren28I do understand that Metallic is trying to systematically eliminate what doesn't work and figure out what does, and i do respect that. It's just very hard NOT to push a treatment on others when YOU KNOW it works and works better than anything you've ever tried at that. Good thing I don't have a bullhorn haha!
I know the feeling. I understand exactly what your intent is, and since I know your history -- and you're a Switchfoot fan -- I can't help but feel your persuasiveness may move me. I've done my homework on Rife, so it's not exactly a stretch at all for me to invest 2 years. I just want to make sure I'm not up against other "evils" -- if you know what I mean. I want to make sure I know what I'm hitting. I think Lyme, Bartonella, Babesia and potential parasites is the issue. I want to make sure that's the issue. Lyme is definitive. A parasite of some sort (Likely Babesia) is a very high probability, at least 95% if I had to guess. Bartonella is entirely clinical, but I have all the symptoms. My feet ache a lot (I feel like I'm carrying 1,000 pounds and it's pressing my feet right into the ground. I have exaggerated psychiatric and G.I. symptoms compared to many other patients I've spoken to. I have the midline belly fat. I eat reasonably well, and exercise 1 hour every single day (occasionally rest once every two weeks maybe) and the fat doesn't budge. My calorie intact isn't excessive. At most, possibly the occasional 3,500 calories while splurging (once every couple weeks), and the rest of the time, about 2,000 to 2,500 calories. Dieting has never budged it. It seems I burn muscle instead of the fat too, even when I supplement with protein. So, that is a symptom of Bartonella of the variety Dr. Schaller talks about in his book. As far as Parasites, I don't know what symptoms they should cause -- I only know what the Malarone is treating and I haven't read much on them.
quote: lymielauren28I've told many of my out-of-state Lyme friends that haven't rifed yet that they're lucky I don't live closer - I'd strap them down in front of my machine and make them use it, LOL!
It's just something I feel so strongly and passionately about because it's been so effective and miraculous for me. I also know that it may not be as effective for the next "lymie" - we're as different as our symptoms as far as what works and what doesn't...
You said it sister. I thinking very carefully about it, because if I choose to do it, I may end up doing it within the next couple months. I'll finish this VFEND. We'll see how I feel. If I continue to improve, I'll do that. If I don't, I'll go back to Tetracycline so I can give my body a rest. Then, I'll come off all treatment entirely. How long do I have to be off antibiotics before beginning Rife therapy? What is it, like 1 month?
Also, if I do the machine, it's the EMEM3D2, with the manual knobs and the radiant bulb, as well as the hand held contact device with the metal plate you stand on. Which method is encouraged in your options?
[ 11-22-2009, 01:15 PM: Message edited by: METALLlC BLUE ]
-------------------- 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.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Hi Metallic,
One Sept. I was at an appt with Dr. H and he said that because of my heavy cognitive symptoms, the next time I came to NY we were going to discuss IV treatment, but he wanted to try one more treatment first because of some success I had when we treated a GI infection with Cipro.
He put me on Levaquin (also Malarone, Lariam, Tindamax, and some others). In the meantime, I read about Humaworm and started on it myself.
When I went back in Jan. I was feeling much better and my head had cleared. I saw a HUGE tapeworm pass with the Humaworm. He asked how I knew it was a tapeworm. I said because it was flat, about 7 ft. long that I saw, and I gained 10 pounds after passing it, and my appetite reduced.
I did Humaworm four times. I passed probably 30 roudworms about 10-15 inches long using Enula.
Not everyone has visible parasites, in fact, something like 90% of parasites are not visible to the naked eye.
Dr. H and I really did not know how much improvement came from Humaworm and how much from bart treatment. I took Levaquin for 3 months, then followed it up with Rifampin for 6 weeks. Rifampin may as well have been sugar pills as there was none of it left.
Even if you don't try Pilates, you might try focusing on holding your foot properly and walking that way around your house a little each day to try to build the muscle up correctly in that foot.
I had an appt with the PA over the phone when I got back from Germany. She said unless I needed to go back on treatment and get direction from them that I didn't need to have phone consults anymore, so I have not had an appt. since Nov of last year. As a result, I have not talked to Dr. H about what I have done since then.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: sixgoofykids Hi Metallic,
One Sept. I was at an appt with my LLMD and he said that because of my heavy cognitive symptoms, the next time I came to NY we were going to discuss IV treatment, but he wanted to try one more treatment first because of some success I had when we treated a GI infection with Cipro.
Yeah, that's what some G.I. physicians prescribe for Crohn's Disease with fistualizing components. I had a fistula and man was it painful. Flagyl nor Cipro helped back then but it was under entirely different circumstances. It might be useful now. That's why I'd like to follow up on the Levaquin.
quote: sixgoofykids He put me on Levaquin (also Malarone, Lariam, Tindamax, and some others). In the meantime, I read about Humaworm and started on it myself.
Do you think I could benefit from a similar protocol? Lariam and Tindamax are generally safe?
quote: sixgoofykids When I went back in Jan. I was feeling much better and my head had cleared. I saw a HUGE tapeworm pass with the Humaworm. He asked how I knew it was a tapeworm. I said because it was flat, about 7 ft. long that I saw, and I gained 10 pounds after passing it, and my appetite reduced.
How long were you treating with those antibiotics and the Humaworm? Was it a month between appointments or longer?
quote: sixgoofykids I did Humaworm four times. I passed probably 30 roudworms about 10-15 inches long using Enula.
Not everyone has visible parasites, in fact, something like 90% of parasites are not visible to the naked eye.
How far apart was each cycle of Humaworm, and did you stay on the antibiotics the whole time. How long did you stay on the antibiotics and did you start each one individually? Was there different time frames for each drug or were they generally all stopped together?
quote:sixgoofykids He and I really did not know how much improvement came from Humaworm and how much from bart treatment. I took Levaquin for 3 months, then followed it up with Rifampin for 6 weeks. Rifampin may as well have been sugar pills as there was none of it left.
Was the Levaquin, Tindamax, Malarone and Lariam all taken together for that three months? I'm wondering if going back to Rifampin would be beneficial even though my Liver Enzymes went up. I figure what's the worst that could happen if I run testing one week into it? If the numbers go up, I stop, and if they don't, I could continue? Thoughts? The Bartonella is really a concern because we don't know what type of Bartonella it is -- or if it even is Bartonella -- Like Burrascano says. Whatever it is, it has the same symptoms other patients have complained about.
quote:sixgoofykids Even if you don't try Pilates, you might try focusing on holding your foot properly and walking that way around your house a little each day to try to build the muscle up correctly in that foot. [Smile]
I have Flexible Foot Flat Feet with tibia torsion on the same leg. It's a ***** and I do have the symptoms you mentioned. Over pronation, and an inability to control it. I bought a stretching device which has helped a lot. It's a simple tool that I bought for 30 dollars. I used it for about two weeks and my feet improved a lot. I think Plantar Fascitis was involved too because icing in combination with doing forward and reverse calve exercises (using the device and just flexing my foot back and forth -- seemed to improve flexibility and improve the foot. However, it's going to be a chronic problem for life unless I wear shoes all the time. Without the support the foot collapses no matter what I do, and the muscles surrounding the area just go back to the way they were. It really sucks, but at least I know I'll be able to walk reasonably ok at some point.
quote: sixgoofykids I had an appt with the PA over the phone when I got back from Germany. She said unless I needed to go back on treatment and get direction from them that I didn't need to have phone consults anymore, so I have not had an appt. since Nov of last year. As a result, I have not talked to my LLMD about what I have done since then.
What have you done since then, just the things you mentioned? Are you sleeping at set times and exercising beyond the Pilates? Do you find you can think clearly? What does the Bionic do anyway -- biologically speaking. I know it involves photons but beyond that no matter how much data I read about it I still never quite understand the underlying way that it works.
[ 11-22-2009, 01:16 PM: Message edited by: METALLlC BLUE ]
-------------------- 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.
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
How does one find a Lyme literate immunologist? Goodness.
TF plus is from Researched Nutritionals. I just ordered that, will let you know how it goes.
-------------------- Immunological impairment could mean you might need a Lyme Literate Immunologist. However, before that I'd try Transfer Factor Plus, with continual high dose antibiotics (Preferably those known to "not" affect white blood cells or do anything else to the immune system.). Immune stimulation and modulation comes in a variety of forms, but light to moderate exercise for 20-30 mins can help increase immune response when combined with high dose antibiotics, LDN, Transfer Factor. The exercise part works for me. The Transfer Factor would have likely made a massive impact had I known at the time that I needed high dose antibiotics in combination. I felt "really really" well on Transfer Factor Plus for about one week, but this was before any other treatment. The progress disappeared though. I've also concluded based on my experience that Transfer Factor Plus should not be taken daily. It should be pulsed. Perhaps 5 days on, 5 days off etc. The dose of TF should also be very high, unlike what the package says. It should be at least 9 pills per day taken three times apart. Unfortunately the product is expensive, but with pulsing it, costs would reduce substantially. I think I may return to the TF again as another possibility when I get back on the antibiotics. Cost is about $50 per bottle with 60 capsules. Divide 60 by 9 and it'll only last about 6 days per bottle. So per month, it's about $200 I would think. My concern is some people don't respond though, so it's a risk.
My symptoms do decrease during exercise, which leads me to believe that endorphins combined with anti-inflammatory actions (modulation) help the immune system. IVIG could very well be helpful to you if it really is your immune system. You may need testing further to see if it's necessary though because there are risks of reaction. It's worth investigating though. The LDN was a good idea. Dr. H says combining LDN with a product called "Pekana" which is a Homeopatic treatment helps a lot of his patients. Combined they work much better than either alone he said.
I think the biggest issue is probably Lyme Disease combined with Bartonella. However, since treating the Babesia has helped so immensely, I'm thinking it may be that I'm not progressing because of the Babesia. So, knocking one infection down at a time or together in an order makes sense to me. My immune system is normal aside from dysregulation with inflammation, but the inflammation isn't "insane." It's more along the lines of a low level inflammation that creates a lot of these symptoms, and if the proper infections are targetted, the triggers removal will decrease the inflammation.
Posts: 3528 | From US | Registered: Apr 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: How does one find a Lyme literate immunologist? Goodness.
TF plus is from Researched Nutritionals. I just ordered that, will let you know how it goes. CD57 How does one find a Lyme literate immunologist? Goodness.
TF plus is from Researched Nutritionals. I just ordered that, will let you know how it goes.
The first place to start would be to ask your physician you see for the illness. They "might" know of someone who is at least Lyme friendly.
The Transfer Factor Plus I was talking about is made by 4 Life, but you can compare the products to see if they're compatible.
-------------------- 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.
posted
Your symptoms are similar to mine. Biaxin, rifampin, plaquenil, malarone. They all help some, but I can't seem to get over the hump of about 30-40% improvement, some days even less.
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posted
Six (and all)...I see the same LD as you, only the other PA. I have bugged him for months about parasites, since I feel it is a problem for me. Finally, he talked with an infectious disease doc in NYC who deals with parasites. He says he is not well versed in treating them, talked with this doc, and they both feel it would be worthwhile for me to see him.
Nothing I have been in in a year and 1/2 has worked for me. Right now I'm on rocephin, Factive, and Plaquenil.
It's always in the back of my mind, you saying you didn't see any improvement until you dealt with the parasites. I had a tapeworm as a kid, and I think it never went away.
Posts: 847 | From upstateNY | Registered: Dec 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by METALLlC BLUE: [QUOTE] Do you think I could benefit from a similar protocol? Lariam and Tindamax are generally safe?
Lariam can have some psych effects. I hallucinated twice, the first two times I took it, but didn't tell Dr. H (I was bad! LOL). Then no trouble after that. You could talk to Dr. H about it. I know I was on several other things - lariam, malarone, tindamax, levaquin, artemisia, and I can't remember which antibiotic .... maybe mino? or amoxy? In the end, I think it was the levaquin more than the malarone/lariam because it ended up that I had to go back on Mepron, those two weren't enough.
quote: How long were you treating with those antibiotics and the Humaworm? Was it a month between appointments or longer?
It was a little over three months, but the Humaworm was only 30 days. I had monthly phone consults and blood work, but I have to fly to get to NY so he didn't make me come every month.
quote: ]How far apart was each cycle of Humaworm, and did you stay on the antibiotics the whole time. How long did you stay on the antibiotics and did you start each one individually? Was there different time frames for each drug or were they generally all stopped together?
I did the first three rounds about 90 days apart. Then the next one was several months later. I stayed on the abx. I did add each abx in every couple days so if I had a problem I would know, though Dr. H liked me to start them all together. All were stopped together unless I stayed on one in the new combo.
quote:Was the Levaquin, Tindamax, Malarone and Lariam all taken together for that three months? I'm wondering if going back to Rifampin would be beneficial even though my Liver Enzymes went up. I figure what's the worst that could happen if I run testing one week into it? If the numbers go up, I stop, and if they don't, I could continue? Thoughts? The Bartonella is really a concern because we don't know what type of Bartonella it is -- or if it even is Bartonella -- Like Burrascano says. Whatever it is, it has the same symptoms other patients have complained about.
Yes, I took them all together during that time. The first six weeks was HORRIBLE! Then I saw improvement. The pain the Levaquin caused was almost unbearable .... epsom salts nightly. We didn't know what kind of bart I had either, or if I even had bart.
quote:I have Flexible Foot Flat Feet with tibia torsion on the same leg. It's a ***** and I do have the symptoms you mentioned. Over pronation, and an inability to control it. I bought a stretching device which has helped a lot. It's a simple tool that I bought for 30 dollars. I used it for about two weeks and my feet improved a lot. I think Plantar Fascitis was involved too because icing in combination with doing forward and reverse calve exercises (using the device and just flexing my foot back and forth -- seemed to improve flexibility and improve the foot. However, it's going to be a chronic problem for life unless I wear shoes all the time. Without the support the foot collapses no matter what I do, and the muscles surrounding the area just go back to the way they were. It really sucks, but at least I know I'll be able to walk reasonably ok at some point.
It's good that you're aware of it and are doing what you can do.
quote: What have you done since then, just the things you mentioned? Are you sleeping at set times and exercising beyond the Pilates? Do you find you can think clearly? What does the Bionic do anyway -- biologically speaking. I know it involves photons but beyond that no matter how much data I read about it I still never quite understand the underlying way that it works.
I methodically used the Bionic to treat infections when I got back. I did coffee enemas to help with toxins as I felt I needed them. For a while it was daily, now it's once every couple weeks.
I've done five Hulda Clark liver cleanses. HUGE, HUGE help for me.
I've taken a round of Humaworm. Now I'm doing Dr. Natura (an herbal cleanse).
I tried taking some herbs, but find the photons do better on their own.
KPU has been a big help, second to the Bionic.
Right now I'm in training to become a Pilates instructor so I'm doing 7+ hours per week of Pilates classes, so nothing else as far as structured exercise. I might go on a walk or bike ride for leisure. Before this, I was doing Pilates 2 x per week, weights 2 x per week and cardio 4 x per week for 40 min.
I generally go to bed around the same time and sleep until I wake up. It was 9-10 hours, but has gone down to 7-9 hours.
No cognitive symptoms, except, sometimes I have a poor memory. I have trouble remembering names. I have trouble recognizing faces. None of that is out of the range of normal though, except I think my memory used to be a little better than it is. I can once again remember what I need at the grocery, that was a big deal.
Basically, the photons give energy to the body, and the nosodes taped to the solar plexus with the bacteria in them give the immune system direction. I think that you can't find how exactly they work because I don't think we really know. It works via physics and we're used to chemistry.
I chronicled every single thing I've done in my blog if you want details, though I'm happy to answer in this manner, it's just not as detailed (or as long).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Pages 22 - 46 shows 24 different things that interact with Lyme. It's an impressive diagram!
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Here is the list of interactions from that chart that someone listed above my post. Here are the ones I've treated heavily (T) and here are the ones that I haven't treated (U)(Undone), and here are the ones I think were undertreated and still possibilities (UP)
Bartonella (UP)
Anaplasma/Ehrlichia (T)
Parasites (U)
Mycoplasma (T)
Morgellons (U)
Heavy Metals (T)
Allergy (U)
Hormone Dysregulation (UP)
Adrenal Fatigue (U)
Pesticides (Environmental Pollutants) (U)
Geopathic Stress (U)
Worms (U)
Prions (U)
Electromagnetic Stress (U)
Genetic Mutations (U)
Depression & Anxiety (T)
Dysbiosis/SIBO (U)
Viruses (UT)
Biotoxins (T)
Yeast (T)
Mold (UP)
Leaky Gut (U)
Babesia (UP)
Bacteriophage (U)
Now I'll list the them in the order of treatment through total untreated and mention some of the things that were done or not done. My primary focus is on the Babesia, Bartonella, Parasites presently. If these are preventing recovery from Lyme, then I need to figure it out.
Treated Heavily
(T)I never was diagnosed with anaplasma/Ehrlicia, but I treated it extremely heavily with drugs that would have resolved the problem.
(T)Mycoplasma Pnemonia was heavily treated as well, with cyclines, quinalones, and a variety of drugs.
(T)Heavy Metals: Mine were high for Mercury and Lead. I have treated heavily using the Cowden, Metal Chelation, including Chelex, Chlorella, ALA, NAC, for 6-12 months. I think (though can't say definitively) that this was treated adequately.
(T)Depression and Anxiety were treated symptomatically and responded to "only" Welbutrin, Lamictal and Ativan. None of the other treatment drug choices worked. I still have a lot of depression, but it's far from significant like it was.
(T)Biotoxins have been treated at length, but there are protocols like the Shoemaker that were recommended, but which I never did. I didn't feel that this direction was necessary right now.
(T)Yeast & Mold were treated with Grapefruit Seed Extract, Probiotics, VFEND, and Diflucan, as well as Nystatin and other products from Cowden as well as Dr. Zhang.
Untreated issues:
(U)Parasites could very well be a problem in my case, as well as worms. I'm considering this fully right now as the treatment is easy and can be done quickly.
(U)Morgellons: I doubt this has any role in my condition. I've seen no "major" symptoms that stand out. It was left untreated for this reason.
(U)Allergy: I have dust allergies and possibly allergies to certain grains (Including Gluten), but the symptoms disappear at times, allowing me to eat things just fine, and other times I get gas and bloating. As far as medication allergies, I've had some. There could be other allergies at work, but I don't think that's an issue to get into at this point on the path.
(U)Adrenal Fatigue: I don't appear to have it, given I have the opposite of what most here have. I have hypercortisolism in the morning and evening. My levels are always high. Rather this would be a hormone dysregulation. We have used treatments for that.
(U)Pesticides (Environmental Pollutants): It's unlikely that this is my problem. I've done treatments that would indirectly target this, and of course I feel no better no matter where I go for extended periods of time. However, we did have Mold on my bathroom ceiling and air conditioner, so in a sense we treated those factors.
(U)Geopathic Stress: Someone told me to check the house for Radon. Is there other things I should be looking for? As far as I know that was tested, but I have to confirm it.
(U)Worms: A long with Parasites, it's an issue that is up in the air. I am very seriously preparing to possibly pursue that direction shortly.
(U)Prions: Never considered it. I'm not really sure I could. How would it be handled?
(U)Electromagnetic Stress: I feel the same no matter where I go. Away from EMF, and in front of my Wireless PC. Nothing seems to change this aspect of my health that I know of. Genetic Mutations
(U) Leaky Gut: I had this problem at one time. It appears to be gone now. If I treated it, it was by accident and thus I consider untreated. I used heavy Prednisone for a period of time before diagnosis and the symptoms went away entirely, along with all the bowel inflammation which I think caused it (leading to healing). It's unknown exactly what happened.
Undertreated and or a possibility:
(UP)Bartonella: This is a big one. I'm going to pursue a long course of Levaquin to see. I may consider Rifampin again, but the first time I had high liver enzymes as a result of it's use. Are there other treatments to mix with Levaquin or would it be effective itself over the 3 + month period? It's been undertreated in my opinion.
(UP)Hormone Dysregulation: We used Seriphos to lower my cortisol levels but the problem seemed a bit bigger and may need more options. What are my options for lowering that as well as other things? I did treat Thyroid with Armour T for many many months. No change was noted.
(UP)Viruses: All my tests came back negative except a low IGG titer for EBV. We treated it with Valtrex. I asked about heavier treatments but they said it wasn't a concern without other viral components.
(UP)Babesia: We've hit it hard with Zithromax, Plaquenil, Mepron, and now Malarone. We used high doses. The symptoms improved but aren't gone. I also used extremely high doses of Artemesiae by Dr. Zhang while on the Mepron/Zith. The doctor told me to drop it after I was seeing no results. Any recommendations for further Babesia therapies?
-------------------- 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.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: keltyl Six (and all)...I see the same LD as you, only the other PA. I have bugged him for months about parasites, since I feel it is a problem for me. Finally, he talked with an infectious disease doc in NYC who deals with parasites. He says he is not well versed in treating them, talked with this doc, and they both feel it would be worthwhile for me to see him.
Nothing I have been in in a year and 1/2 has worked for me. Right now I'm on rocephin, Factive, and Plaquenil.
It's always in the back of my mind, you saying you didn't see any improvement until you dealt with the parasites. I had a tapeworm as a kid, and I think it never went away.
Perhaps you could start treating yourself with the Humaworm. I looked into it, and it's only $30. I'm having a problem purchasing the product from their website though. Their Paypay is rejecting my credit card for some reason. Is there another place I can buy the product Six?
-------------------- 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.
quote: (U)Worms: A long with Parasites, it's an issue that is up in the air. I am very seriously preparing to possibly pursue that direction shortly.
Ivermectin seems good .And cheap.
quote: Hormone Dysregulation. High Cortisol
Exercise lowers cortisol levels. One of the things to try
quote: (UP)Babesia: We've hit it hard with Zithromax, Plaquenil, Mepron, and now Malarone. We used high doses. The symptoms improved but aren't gone.
Add Clindamycin to Plaquenil? Clindamycine + quinine is treatment of choice for babs
Posts: 856 | From MA | Registered: Jul 2009
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METALLlC BLUE
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Member # 6628
posted
quote: sixgoofykids Lariam can have some psych effects. I hallucinated twice, the first two times I took it, but didn't tell my LLMD(I was bad! LOL). Then no trouble after that. You could talk to himabout it. I know I was on several other things - lariam, malarone, tindamax, levaquin, artemisia, and I can't remember which antibiotic .... maybe mino? or amoxy? In the end, I think it was the levaquin more than the malarone/lariam because it ended up that I had to go back on Mepron, those two weren't enough.
This is very helpful. I haven't done a few of those drugs, including Amoxy. Did they give that to you prior to Bicillin or does it have different affects than Omniceft and Bicillin? I've been told the high dosing has an impact? If you were in my shoes, what would you focus on -- knowing what you do now?
quote: sixgoofykids It was a little over three months, but the Humaworm was only 30 days. I had monthly phone consults and blood work, but I have to fly to get to NY so he didn't make me come every month.
Ok, very helpful. I feel like I was undertreated inspite of what the doctor said. The N.P (J) especially was most hesitant about prescribing just about anything I needed. He felt alternative methods were more suitable, but I don't agree at this point.
quote: sixgoofykids I did the first three rounds about 90 days apart. Then the next one was several months later. I stayed on the abx. I did add each abx in every couple days so if I had a problem I would know, though he liked me to start them all together. All were stopped together unless I stayed on one in the new combo.
It only makes sense to me, and I don't understand why he doesn't suggest the same thing to patients. Do you think multiple cycles are necessary for the average person? And what about this Natura that you've mentioned. What is it's purpose?
quote: sixgoofykids Yes, I took them all together during that time. The first six weeks was HORRIBLE! Then I saw improvement. The pain the Levaquin caused was almost unbearable .... epsom salts nightly. We didn't know what kind of bart I had either, or if I even had bart.
It's good that you're aware of it and are doing what you can do. [Smile]
When you saw horrible, do you mean Herxheimer horrible -- or that with side effects etc? The pain of the Levaquin, was that a side effect or the actual infection being targetted? When I used Bactrim, I had really bad pain during the Herxheimer period. It totally incapacitated me, but then lifted. It's such a shame I can use it.
quote: sixgoofykids I methodically used the Bionic to treat infections when I got back. I did coffee enemas to help with toxins as I felt I needed them. For a while it was daily, now it's once every couple weeks.
I hear a lot about the enemas. I'm not sure how to tell whether it would or wouldn't be necessary. I suppose I would have to try to know, and while I'd love to feel better, something tells me I have bigger fish to fry first.
quote: sixgoofykids I've done five Hulda Clark liver cleanses. HUGE, HUGE help for me.
I've taken a round of Humaworm. Now I'm doing Dr. Natura (an herbal cleanse).
The Natura herbal cleanse and Hulda Clark products are in capsule form? How long are cycles (i.e. 2 months?) between the 5 times you've done it, and what was the duration of each cycle? (i.e. 30 days)
quote:sixgoofykids I tried taking some herbs, but find the photons do better on their own.
The machine cost a lot of money, which is sad for someone like me, but I do think I have access to the Bionic temporarily if I went to visit Erica for 3 months -- which I plan on doing. I think I need to explore other things before I reach that point though.
quote: sixgoofykids KPU has been a big help, second to the Bionic.
Can you tell me more about the KPU, is it a product, cost, cycles, duration? What is it basically?
quote: sixgoofykids Right now I'm in training to become a Pilates instructor so I'm doing 7+ hours per week of Pilates classes, so nothing else as far as structured exercise. I might go on a walk or bike ride for leisure. Before this, I was doing Pilates 2 x per week, weights 2 x per week and cardio 4 x per week for 40 min.
I generally go to bed around the same time and sleep until I wake up. It was 9-10 hours, but has gone down to 7-9 hours.
No cognitive symptoms, except, sometimes I have a poor memory. I have trouble remembering names. I have trouble recognizing faces. None of that is out of the range of normal though, except I think my memory used to be a little better than it is. I can once again remember what I need at the grocery, that was a big deal.
Basically, the photons give energy to the body, and the nosodes taped to the solar plexus with the bacteria in them give the immune system direction. I think that you can't find how exactly they work because I don't think we really know. It works via physics and we're used to chemistry.
I chronicled every single thing I've done in my blog if you want details, though I'm happy to answer in this manner, it's just not as detailed (or as long).
Wow, I'm impressed. So basically you're living the same type of lifestyle I would live. What an amazing recovery process. It's a shame it takes such hard work and so much money, but I'm really appreciative of your helping me and that you are doing so much better. I'd take one of "your" classes one day when I get better. Wouldn't that be fun? I'm definitely motivated now instead of discouraged. Yet, still burned out at the same time. I'll come out of it though.
I'm going to read your blog in detail to clarify all these points. I'd love to know more about how Photon therapies work, but unfortunately it remains a mystery right now for me. I don't know physics or chemistry "that" well.
[ 11-22-2009, 01:17 PM: Message edited by: METALLlC BLUE ]
-------------------- 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.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: Ivermectin seems good .And cheap. Exercise lowers cortisol levels. One of the things to try. Add Clindamycin to Plaquenil? Clindamycine + quinine is treatment of choice for babs.
Excellent, so you question plaquenil with Clindamycin? I think I'd certainly give the CL+Q a shot after the Malarone. Can they actually be done together if you know?
I get plenty of exercise (Not enough stretching though), but I ride my stationary bike for about 1 hour a day. I might benefit from doing it earlier instead of a few hours before bedtime. I also find I'm far more stressed when I play my Xbox near bedtime.
I think those may help. Stretching and meditating may be worthwhile as they give me time to slow down. The only problem is I don't like doing either!
-------------------- 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.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Here is some additional information to help people see "exactly" where I am in my symptoms and their intensity. It'll help you see what areas are most affected. I wrote this as part of an update for my LLMD when I saw him on the 15th of September. My symptoms haven't changed since.
Here is a legend so you understand what things mean:
Rating Scale. You'll see the words "None" "Low" "high" etc, following the symptom on the list. Each one below gives you an idea from your own perspective how it affects me.
None: No symptoms at all
Low: Minimal and intermittent, tolerable
Moderate: Some symptoms, some what tolerable
High: Intense symptoms, potentially intolerable
Severe: Intolerable symptoms, extreme.
Note: The Symbol (+ 1) indicates a step up from one tier to another since the last appointment. (- 1) indicates a step down from one tier. (+ 2) onward indicates two, etc.
Present Symptoms: [09-15-09]
Face, Neck, Head o Unexplained Hair loss - Moderate o Headaches - Moderate o Twitching of facial or other muscles - Low o Facial Paralysis - None o Tinging (nose, cheeks or face) - None o Stiff or painful neck, creaks, cracks - High o Jaw pain or stiffness - High + 1 o Sore throat - None o Facial Nerve Pain - Moderate + 2
Eyes & Vision o Double or Blurry Vision - High o Floaters -Moderate - 1 o Pain or Swelling of Eyes - Low o Sensitivity To Light - High o Flashing Lights - Moderate
Digestive and Exretory Systems o Diarrhea - None o Constipation - None o Bloating Gas - High o Abdominal Pain - Moderate o Irritable Bladder (trouble stopping or starting)- Low o Upset Stomach (Nausea or Pain) - Moderate
Musculoskeletal System o Joint Pain or Swelling or Arthritis - High o Stiffness Of Joints, Back, Neck - High o Muscle Pain or Cramping - High
Respiratory & Circulatory o Shortness Of Breath, Cough - Low - 1 o Chest Pain or rib soreness - High o Night sweats or Unexplained chills - Moderate - 1 o Heart Palpitations or Extra Beats - None o Heart Blockage - None
Neurological System o Tremors or unexplained shaking - Moderate o Burning or Stabbing Sensations - High o Weakness or partial paralysis - Moderate o Pressure In Head - Moderate o Numbness in body, tingling, pinpricks - Moderate o Poor balance, dizziness, difficulty walking in morning - High o Lightheadedness, wooziness - Moderate o Ringing in ears Low - 1 o Fine motor movement impaired: High
Psychological, Psychatric Well Being o Mood Swings, Irritability - High - 1 o Unusual Depression - Moderate o Low frustration tolerance: - Severe o Suicidal Thoughts: Low + 1 o Disorientation (Getting or Feeling Lost) - Moderate o Feeling as if you're losing your mind - Moderate o Overemotional reactions - High o Too much sleep or Insomnia - Severe o Difficulty falling asleep or staying asleep. - Severe
Mental Capacity, or Cognitive Function o Memory Loss (Short or long term) - High o Multitasking - Severe o Confusion (Difficult Thinking) - High o Difficulty with Concentration or reading - High o Going To the Wrong places - Moderate o Speech Difficulty (slurred or slow) - Low o Stammering Speech - Low o Forgetting how to perform simple tasks - Moderate
Reproductive o Loss Of Sex Drive - Moderate o Sexual Dysfunction (Testicular pain) - None o Impotence - None
General Well-Being o Unexplained Weight Loss or Gain - High o Extreme Fatigue - High o Swollen Glands - None o Unexplained Fever (High or low grade) - Moderate o Continual Infections - None o Wax and Waning Symptoms - High o Migrating Pain - High
Skin o Unexplained Rashes - High o Itchy Skin: High + 1 o Slow Healing: High
Repeat of the Legend for post reference:
None: No symptoms at all
Low: Minimal and intermittent, tolerable
Moderate: Some symptoms, some what tolerable
High: Intense symptoms, potentially intolerable
Severe: Intolerable symptoms, extreme.
Note: The Symbol (+ 1) indicates a step up from one tier to another since the last appointment. (- 1) indicates a step down from one tier. (+ 2) onward indicates two, etc.
Cliff Notes: This post contains a list of my symptoms and their intensity. I update the list monthly and provide my LLMD.
-------------------- 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.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by METALLlC BLUE: [QUOTE] ]This is very helpful. I haven't done a few of those drugs, including Amoxy. Did they give that to you prior to Bicillin or does it have different affects than Omniceft and Bicillin? I've been told the high dosing has an impact? If you were in my shoes, what would you focus on -- knowing what you do now?
I think Bicillin would probably be better. Dr. H himself used Bicillin to treat his own Lyme Disease. I also liked Omnicef, but because of GI trouble took Cedax (same family) instead. I was not willing to do Bicillin. I was very thin when I tried it (one time) and it just didn't work out for me. I also bruised very, very easily at the time.
You do need high dosing on the amoxy. I did 7500 mg per day.
Knowing what I do now, I think hitting the Lyme is the biggest thing. I still had bart and babs last time I was muscle tested, which was in April, but I was very functional ever since I returned from Germany the Nov. before that. The babs and bart weren't as significant with the Lyme gone. Though I think with abx treatment it's a good idea to treat coinfections .... I think ILADS experience has shown that.
quote: Ok, very helpful. I feel like I was undertreated inspite of what the doctor said. The N.P (J) especially was most hesitant about prescribing just about anything I needed. He felt alternative methods were more suitable, but I don't agree at this point.
Maybe see if you can make appts periodically with Dr. H. He would try to switch me over to herbs, but we always ended up going back to abx as soon as I declined.
quote: It only makes sense to me, and I don't understand why he doesn't suggest the same thing to patients. Do you think multiple cycles are necessary for the average person? And what about this Natura that you've mentioned. What is it's purpose?
Yes, I do think it takes multiple cycles, and also multiple treatments. I never saw one roundworm with Humaworm, but saw about 30 of them on Enula.
Dr. Natura is about cleansing the colon. It also has cleansing herbs for the liver, kidneys, etc. Check out their website, it has impressive herbs in it.
quote: When you saw horrible, do you mean Herxheimer horrible -- or that with side effects etc? The pain of the Levaquin, was that a side effect or the actual infection being targetted? When I used Bactrim, I had really bad pain during the Herxheimer period. It totally incapacitated me, but then lifted. It's such a shame I can use it.
Herxheimer horrible. We presumed the pain to be from the infection. I talked to Dr. H about it on the phone one night because I was concerned about it. It ended up being the infection as the pain started lifting and went away completely during the 3 month period. I felt really good, had a clear head, and was highly functional at that point. It lasted for a while, but then babesia creeped in again. The bart seemed to stay away.
quote: I hear a lot about the enemas. I'm not sure how to tell whether it would or wouldn't be necessary. I suppose I would have to try to know, and while I'd love to feel better, something tells me I have bigger fish to fry first.
A lot of what we do creates toxins. I found the enemas gave me relief. I did them daily almost all through abx treatment. On really bad days my kids would make the coffee for me and bring it upstairs because they could see the difference themselves. Dr. H is supportive of them, you can ask him about them. He doesn't outright recommend them (LLMD's have to be careful, you know), but he was supportive of me doing them.
quote: The Natura herbal cleanse and Hulda Clark products are in capsule form? How long are cycles (i.e. 2 months?) between the 5 times you've done it, and what was the duration of each cycle? (i.e. 30 days)
Here's the Hulda Clark website. http://tinyurl.com/m45nd8 You don't have to buy a product from them, it's olive oil, grapefruit juice, epsom salts, and orthinine. I did them two weeks apart, except for a couple that I waited a little longer.
Dr. Natura is capsules and fiber in the morning and tea in the evening. The first time you do it, you're supposed to do it for three months. It's a more expensive one.
quote:The machine cost a lot of money, which is sad for someone like me, but I do think I have access to the Bionic temporarily if I went to visit Erica for 3 months -- which I plan on doing. I think I need to explore other things before I reach that point though.
Or maybe even do the follow up work with the PE1, which is less expensive. Some who can't get the Bionic are using it with good results. You do need follow up work after the Bionic.
quote: Can you tell me more about the KPU, is it a product, cost, cycles, duration? What is it basically?
Basically, it's addressing a mineral deficiency that Dr. K has found 80% of Lyme patients have. There are a few threads here on it. Pyroluria, kryptopyrroluria threads. Also, check out drrandy.org, then click on articles, he's written a good article on it.
quote: Wow, I'm impressed. So basically you're living the same type of lifestyle I would live. What an amazing recovery process. It's a shame it takes such hard work and so much money, but I'm really appreciative of your helping me and that you are doing so much better. I'd take one of "your" classes one day when I get better. Wouldn't that be fun? I'm definitely motivated now instead of discouraged. Yet, still burned out at the same time. I'll come out of it though.
I'm going to read your blog in detail to clarify all these points. I'd love to know more about how Photon therapies work, but unfortunately it remains a mystery right now for me. I don't know physics or chemistry "that" well.
It is nice to be living life again and only thinking of Lyme when I'm on here answering questions. I'd love to have you in one of my classes! I taught my husband today ... my first guinea pig. He did great, but I found it hard to teach! I'll get it figured out though.
posted
I am trying to keep up with this thread since I need this info too. Thanks!
Metallic...I did several months of Bicillin 2-3x a week. Didn't do a thing for me either, just like everything else.
Posts: 847 | From upstateNY | Registered: Dec 2007
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Wow, I am impressed. I'm not nearly as sick as you and you are FAR more organized than I am!
The sx that stood out are SO typical of lyme and babesia. And, those two work together to suppress the immune system for the other.
Babesia sx include many of yours that you rate as "high" and "moderate". They included, shortness of breath, fatigue, night sweats, difficulty sleeping/insomnia, depression, weight gain, and fever. The shortness of breath and sweats have improved, so that's great.
I guess stay on it (I *think* you're still on Malarone). It can take a very long time depending on the severity of the infection, and yours seems severe. Mepron is supposed to work better, as you know, but whatever works for you is best.
(Babs has been my big problem, so I'm partial to getting rid of it. Many of my sx I thought were from Lyme were actually Babs).
This is a great thread, btw. It lays out every treatment option there is.
God, I hope something finally works for you. I think it's great that even with all your illness you have a GF! That's awsome!
James
Posts: 872 | From New York City | Registered: Jun 2008
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posted
Metallic....Apologize for the name, I really did know that but sure you know what a Lymetard is, especially for me when it starts getting to be late afternoon.
Posts: 847 | From upstateNY | Registered: Dec 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
One note re Levaquin: my current LLMD says that it actually hits Lyme as well as bart.
Posts: 3528 | From US | Registered: Apr 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Further notes for consideration. A patient sent this to me privately. Actually a few patients did in various combinations.
I'm not sure if they would tolerate their names being used, so I'll just supply the data.
Stem Cell therapy is currently being considered a treatment for aspects of Lyme Disease, including potentially in helping patients with compromised immune systems.
Stealth Pathogens (L-form of Lyme)Another area that is classic, yet has not yet been mentioned, is the work of Dr. Lida Mattaman. She, as you may know, was well known for the discovery of cell wall deficient bacteria. We later learned that Lyme Disease, also has a growth cycle beyond the simple Spirochete. It has a Cyst form: doesn't cause symptoms in most patients. It has the spiral form -- or Spirochete (it is mobile), and finally the L-form.
Antibiotics do not work on the L-form without forcing conversion. So how do we get a pathogen to avoid going into cyst form or L-form (antibiotics and many herbal therapies create this conversion)?
Rife Machines (and) Marshall ProtocolWell another patient reminded me of the Marshall Protocol and Rife Therapy. I recalled Rosner talking about Benicare in 2005 "Lyme Disease and Rife Machines:, but it hadn't clicked yet. The compatibility issue was still a concern. Bryan has since confirmed they are compatible and far more comprehensive than either done alone.
Cell wall drugs works great in patients who have an untreated infection -- without co-infections, because the load of the infection actually being reduced significantly and cyst conversion happens rapidly (cysts don't cause symptoms as far as we currently know) Relapse is simply a result of a few factors we know of, but especially the cyst form, and L-forms which appear when the bacterium is exposed to hostile events. So why do protein synthesis inhibiting drugs like Tetracycline work in me? Cell wall deficient bacterium respond partially to inhibitors. So patients with a high load of this form or cyst form, would receive only a minimal "partial" response. Hence, the gain of only 5-10% for me with Tetracycline. I'm a non-responder to Minocycline at 200mg taken for 2 months, and a "partial" responder to Doxycycline, but only temporarily.
]Why Only Partial Response or No Response
Bryan Rosner writes:
"When Vitamin D levels are appropriately reduced (which leads to decreased production of 1,25-D), antibiotics not only work better, they can become hyper-effective. So effective, in fact, that only a minuscule dose is needed to elicit powerful antibacterial action. This outcome is seen even in patients who have previously failed to respond to high-dose antibiotic therapy. For example, someone who previously experienced only mild benefits when taking 300mg/day of minocycline will experience dramatic benefits during use of the Marshall Protocol even though doses as low as 10mg/day may be used.
The amplified effect of antibiotics has a twofold benefit. First, it means that antibiotics will actually start to work for people who had not previously responded to them; and second, it means that antibiotic side effects are kept to a minimum during use of the protocol because doses can be kept low. This is great news! The Marshall Protocol solves two of the primary problems facing Lyme Disease sufferers: the marginal effectiveness of antibiotics and the toxic side effects associated with their use. Of course, increased effectiveness of antibiotics also means that herx reactions can be much more severe, thus, special care and caution is necessary. "
So while we've all talked about the Marshall Protocol at various points, I haven't seen this discussed in this context.
[b]Maybe It'll Work For Me or Others[b] We're talking about patients with multiple chemical sensitivities -- patients who are allergic or can't tolerate most antibiotics, and people who have entire failed therapies -- oral, herbal, IV, hemopatic, and onward.
My excuses for not turning to Rife sooner are for the reasons previously mentioned. I had to try things in accordance with reducing symptoms and in an order. However, if I'm only reducing symptoms and not solving the underlying issue fully, I won't see the full recovery I'm looking for.
I have a few ideas of what direction I'll take, but this thread has been incredibly helpful. I'm still looking for more data.
-------------------- 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.
Yes, these are embyronic stem cells, but they were donated by a family who miscarried and the doctor clones the cells, so the doctor does not need an ongoing source of stem cells.
To me, lowering Vitamin D is illogical. Fixing a balance between D2 and D3 is logical, but lowering Vitamin D makes no sense in light of recent research that shows that it helps the immune system even with fighting cancer. It also seems most of us are Vitamin D deficient.
The Marshall Protocol boards kick people off who say something negative about it, so I don't know where to really get a balanced idea of how well it works. I haven't seen people here shouting that it worked great for them like people do for ILADS protocols or rife.
I got the idea that people used rife for maintenance much like I use the photons for maintenance. Not because I feel bad, but to keep it in remission. I don't want this to come back. I treat monthly to prevent relapse, not really to feel better.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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btmb03
Unregistered
posted
"I get plenty of exercise (Not enough stretching though), but I ride my stationary bike for about 1 hour a day. I might benefit from doing it earlier instead of a few hours before bedtime. I also find I'm far more stressed when I play my Xbox near bedtime."
I fully understand that you need to improve MB, but I am impressed by the amount of exercise you are doing. Riding a bicycle for 1 hr?? That alone means you have a pretty good aerobic threshold.]
Have you ever had a bicycle ergometry done? (V.O2 Max test) testing for oxygen uptake? If you're doing that much aerobic activity (even at a slow pace) you doing extremely well. There may be other issues that you're obviously trying to figure out and I hope and pray that you do.
However I think it is important to see what you *are* able to do, like write amazing posts (just skimmed thru this one, can't read each and every post) so intellectually and cognitively you are also doing fairly well just based on what you're telling us.
Sometimes a lot of patients don't realize how far they've come. A subjective number representing a % of functioning is not necessarily an accurate indication of where the patient is at.
In any case I wish you luck and better health!
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:sixgoofykidsI think Bicillin would probably be better. He himself used Bicillin to treat his own Lyme Disease. I also liked Omnicef, but because of GI trouble took Cedax (same family) instead. I was not willing to do Bicillin. I was very thin when I tried it (one time) and it just didn't work out for me. I also bruised very, very easily at the time. You do need high dosing on the amoxy. I did 7500 mg per day.
I did exceedingly high doses and a long duration of IM Bicillin. All it did was leave scar tissue on my rump. The Amoxy seems less appealing now.
quote: sixgoofykidsKnowing what I do now, I think hitting the Lyme is the biggest thing. I still had bart and babs last time I was muscle tested, which was in April, but I was very functional ever since I returned from Germany the Nov. before that. The babs and bart weren't as significant with the Lyme gone. Though I think with abx treatment it's a good idea to treat coinfections .... I think ILADS experience has shown that.
Who did your muscle testing?
quote: sixgoofykidsMaybe see if you can make appts periodically with him. He would try to switch me over to herbs, but we always ended up going back to abx as soon as I declined.
I think he will be far less receptive to most of my ideas unless they involve the IV, and or other drug therapies -- aside from drinking tree bark (which is what he wants me to literally do for 3 months). I'm not certain what I'm going to do, or what I'm going to say to them when I go back for my appointment. I know I'm trying hard to avoid that IV. I want more than just "ok." I don't want to have to keep sticking a PICC or Port in my chest either when I relapse, which appears to be inevitable based on patient reports.
quote: sixgoofykidsYes, I do think it takes multiple cycles, and also multiple treatments. I never saw one roundworm with Humaworm, but saw about 30 of them on Enula.
Dr. Natura is about cleansing the colon. It also has cleansing herbs for the liver, kidneys, etc. Check out their website, it has impressive herbs in it.
Ok, that's helpful.
quote: sixgoofykidsHerxheimer horrible. We presumed the pain to be from the infection. I talked to it about it on the phone one night because I was concerned about it. It ended up being the infection as the pain started lifting and went away completely during the 3 month period. I felt really good, had a clear head, and was highly functional at that point. It lasted for a while, but then babesia creeped in again. The bart seemed to stay away.
So it really makes sense as of presently to go after the Bartonella and Babesia in my case. I'm thinking a three month cycle of Levaquin, combined with Babesia therapy and Parasite therapy would be a good preparation for following Rife (with perhaps additions).
It's a reasonable idea I think.
quote: sixgoofykids A lot of what we do creates toxins. I found the enemas gave me relief. I did them daily almost all through abx treatment. On really bad days my kids would make the coffee for me and bring it upstairs because they could see the difference themselves. He is supportive of them, you can ask him about them. He doesn't outright recommend them (LLMD's have to be careful, you know), but he was supportive of me doing them.
Yeah he's talked about them and given his opinion. I know "exactly" where he stands on it and trust me, he gave me TMI during a few appointments. Funny really.
quote:sixgoofykidsHere's the Hulda Clark website. http://tinyurl.com/m45nd8 You don't have to buy a product from them, it's olive oil, grapefruit juice, epsom salts, and orthinine. I did them two weeks apart, except for a couple that I waited a little longer.
Dr. Natura is capsules and fiber in the morning and tea in the evening. The first time you do it, you're supposed to do it for three months. It's a more expensive one.
Ok, great. Good ideas for potential future cleansing.
quote:sixgoofykidsOr maybe even do the follow up work with the PE1, which is less expensive. Some who can't get the Bionic are using it with good results. You do need follow up work after the Bionic.
Gotcha.
quote: sixgoofykidsBasically, it's addressing a mineral deficiency that Dr. K has found 80% of Lyme patients have. There are a few threads here on it. Pyroluria, kryptopyrroluria threads. Also, check out drrandy.org, then click on articles, he's written a good article on it.
Strange, I've heard about it but don't understand what Pyroluria or Krypto are. Is it a state of disease or a consequence of Lyme?
quote: sixgoofykidsIt is nice to be living life again and only thinking of Lyme when I'm on here answering questions. [Smile] I'd love to have you in one of my classes! I taught my husband today ... my first guinea pig. He did great, but I found it hard to teach! I'll get it figured out though.
Teaching isn't easy. Sadly it's one of my strengths. All the things I'm good at are things I don't like doing. All the things I suck at, are things I enjoy. Go figure?
quote: JamesNYC: Wow, I am impressed. I'm not nearly as sick as you and you are FAR more organized than I am!
The sx that stood out are SO typical of lyme and babesia. And, those two work together to suppress the immune system for the other.
Unfortunately the symptoms are typical of a lot of other things too, which given my track record with co-infections, who knows what else is hanging around between those two little *******s. This is why I'll focus on the Lyme, Babesia, Bartonella, Parasites, and target each one, to see which treatment works. I like breaking things down so I can understand as much as possible. I still won't have objective data, but it still will be useful.
quote: JamesNYC:Babesia sx include many of yours that you rate as "high" and "moderate". They included, shortness of breath, fatigue, night sweats, difficulty sleeping/insomnia, depression, weight gain, and fever. The shortness of breath and sweats have improved, so that's great.
Yeah, now if only all the others would improve. Another issue is that of relapse. Getting better is one thing, but entirely eradicating it is another that I have to figure out. We all do.
quote: JamesNYC:I guess stay on it (I *think* you're still on Malarone). It can take a very long time depending on the severity of the infection, and yours seems severe. Mepron is supposed to work better, as you know, but whatever works for you is best.
Yeah, Malarone is what made the difference, but then again it could just be that the Mepron was the forerunner to the progress. Afterall, sweats did significantly increase with the Mepron, but the improvements never came and that is why they switched me. I can't say more than that. Other antibabesiosis treatments will be needed, I'm just not clear yet on that one. I will be soon though.
quote: JamesNYC:(Babs has been my big problem, so I'm partial to getting rid of it. Many of my sx I thought were from Lyme were actually Babs).
This is a great thread, btw. It lays out every treatment option there is.
God, I hope something finally works for you. I think it's great that even with all your illness you have a GF! That's awsome! [Wink]
I'm hoping we can get all the options by the end, and then on the last page I can collect all the data, simplifiy it, and present it coherently so they can be listed and explained simply.
I am certain I'll find a solution, I'm just not sure where. The girlfriend thing is unbelievable. Awesome relationship, but we have a tough time coping with each others health problems. It's exhausting and so we both needed a break. She went home to be with her family. I'm burned out heavily to the point where I've needed about a month or so of rest. Having been delt the "Options running out" card by the LLMD contributed to my depression and burnout.
quote: keltyl Metallic....Apologize for the name, I really did know that but sure you know what a Lymetard is, especially for me when it starts getting to be late afternoon.
Don't worry about it. Sorry to hear about the IM B not working for you either.
quote: CD57 One note re Levaquin: my current LLMD says that it actually hits Lyme as well as bart.
Great, I'll possibly get a break from the Lyme too if it works somewhat. I'm really not sure what it'll do actually, but it's on my list of probable treatments coming up.
Yes, these are embyronic stem cells, but they were donated by a family who miscarried and the doctor clones the cells, so the doctor does not need an ongoing source of stem cells.
That's positive news.
quote: sixgoofykidsTo me, lowering Vitamin D is illogical. Fixing a balance between D2 and D3 is logical, but lowering Vitamin D makes no sense in light of recent research that shows that it helps the immune system even with fighting cancer. It also seems most of us are Vitamin D deficient.
Bryan Rosner says it's counterintuitive, and while I certainly don't understand it completely, I do have to wonder about the hypothesis of the possibility.
quote: sixgoofykidsThe Marshall Protocol boards kick people off who say something negative about it, so I don't know where to really get a balanced idea of how well it works. I haven't seen people here shouting that it worked great for them like people do for ILADS protocols or rife.
I don't think it has a balanced view, but the good aspect I can see is that it's compatible with Rife, and Rife we know can work. I already avoid the sun and have had low Vitamin D for years -- even with lots of supplementation, so I hardly am concerned about it. The objectivity would be nice, but the possibility is nicer that it could be a potential avenue. I've heard of a number of reports (from people I know) who did do well on the protocol. I also know people who failed to respond.
quote: sixgoofykidsI got the idea that people used rife for maintenance much like I use the photons for maintenance. Not because I feel bad, but to keep it in remission. I don't want this to come back. I treat monthly to prevent relapse, not really to feel better.
Yeah, I understand what you mean. At this point, I've nearly passed all the scientifically supported avenues. The MP has "some" science behind it that can be challenged further before doing anything. I'm looking for less risk, lower cost, and potentially better results from whichever treatment I do. The IV just doesn't make sense. If I fail the therapies in the order of lowest cost to me, lowest risk etc -- I move up to higher cost, lowest risk -- and further, high cost, high risk.
Whatever it takes.
[ 11-22-2009, 01:19 PM: Message edited by: METALLlC BLUE ]
-------------------- 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.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by METALLlC BLUE: I did exceedingly high doses and a long duration of IM Bicillin. All it did was leave scar tissue on my rump. The Amoxy seems less appealing now.
That was what I said ... I work way to hard to keep lumps out of my @$$ to use a drug like that! Amoxy was very unappealing.
quote: Who did your muscle testing?
I'm sorry, I can't say. It was part of the deal. Someone highly trained.
quote: I think Dr. H will be far less receptive to most of my ideas unless they involve the IV, and or other drug therapies -- aside from drinking tree bark (which is what he wants me to literally do for 3 months). I'm not certain what I'm going to do, or what I'm going to say to them when I go back for my appointment. I know I'm trying hard to avoid that IV. I want more than just "ok." I don't want to have to keep sticking a PICC or Port in my chest either when I relapse, which appears to be inevitable based on patient reports.
In rereading what I said, I realize I was unclear. it was when my health declined that he'd put me back on drugs. At the point we were discussing IV, I was actually open to it, but I see your point.
quote: So it really makes sense as of presently to go after the Bartonella and Babesia in my case. I'm thinking a three month cycle of Levaquin, combined with Babesia therapy and Parasite therapy would be a good preparation for following Rife (with perhaps additions).
It's a reasonable idea I think.
Sounds reasonable to me. You have to go with your gut. Listen to your body.
quote: Yeah he's talked about them and given his opinion. I know "exactly" where he stands on it and trust me, he gave me TMI during a few appointments. Funny really.
LMAO! They aren't as bad as they sound and they really help a lot of people.
quote:Strange, I've heard about it but don't understand what Pyroluria or Krypto are. Is it a state of disease or a consequence of Lyme?
I think it can most likely work either way. I think for me it came first. I really seem to have a family history of it symptom-wise, though I'm as likely to convince them to look into this as I am to have them realize their other symptoms are from Lyme.
They don't really know for sure. Are people with this condition more likely to get Lyme or does Lyme cause this condition?
quote: Teaching isn't easy. Sadly it's one of my strengths. All the things I'm good at are things I don't like doing. All the things I suck at, are things I enjoy. Go figure?
It's a strength for me, too. It's just taking pilates classes and teaching them are sooo different!
Maybe you like a challenge?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Her blog is great read overall and details her experience using HESC for treatment of lyme
Treatment looks costly at first glance till you realize that same services in US would cost you 10 fold (2 month in hospital with daily procedures , tests and MRIs)
Posts: 856 | From MA | Registered: Jul 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: btm03I fully understand that you need to improve MB, but I am impressed by the amount of exercise you are doing. Riding a bicycle for 1 hr?? That alone means you have a pretty good aerobic threshold.]
Have you ever had a bicycle ergometry done? (V.O2 Max test) testing for oxygen uptake? If you're doing that much aerobic activity (even at a slow pace) you doing extremely well. There may be other issues that you're obviously trying to figure out and I hope and pray that you do.
I have not had that test done. Yeah, I got past the exercise induced debilitating fatigue to some extent. However, it comes back when I try to use certain muscle groups "anaerobically". Biceps, Upper Legs and shoulders seem to bring on the symptoms fastest. I've never known why. So weight training can trigger it. It's strange how functional I must seem given all the contradictory ways my body works, but the one real indepth issue is that I feel really bad doing various daily activities -- even if unlike some patients I can force myself to do them. Doing things makes things worse though, so I don't force anymore. I've come to the stark conclusion that pushing only leads to more suffering in my case and I'm uncomfortable enough at rest.
Some activities, like the bike -- don't instigate symptoms unless I push beyond that 1 hour (or if I up the intensity) then the post-exercise debilitation would occur. If you really want to see a contradiction, think about this. I play X-box *while* I ride the bike. It took me about 6 months to get used to sitting upright peddling while losing myself mentally in a game. Multitasking, right? Yet why in the world can't I multitask in regular activities?
The symptoms often happen in the CNS. Dizzyness, crippling fatigue, feeling like you're going to pass out -- those types of feelings. Vision becomes blurry and whitish looking etc.
I could run 5 miles if I wanted to, but the suffering it would induce would be enormous and my recovery time would take literally about two weeks or longer to heal.
So, the disease has changed with a lot of Tetracycline, (Possibly IV V, 2 week Bactrim, and 2 Week Levaquin) and now Malarone, but I still can't get past 35-40%. I don't leave my house because it makes me feel worse. It's like the more stimulation of sound, light, cars, wind aggravate me and my frustration tolerance drops. I come moody faster and become quick to anger. In a controlled environment, like my living room, in loose fitting clothing, I feel much better.
I save all my energy, everyday, so I can ride my bike and just do the chores I need to do -- which I haven't been doing lately because I've been so fatigued.
quote: btm03However I think it is important to see what you *are* able to do, like write amazing posts (just skimmed thru this one, can't read each and every post) so intellectually and cognitively you are also doing fairly well just based on what you're telling us.
There is no doubt I've come a long way, but a long way for me was the line between death up to 35%. Tetracycline would boost me another 5-10% if fortunate. That leaves a lot of areas still crippled. For example, I write well, but I can't "write" well with my hands. My dexterity and muscles twich and cause me to lose control of the pen, so I have to grip it hard to make a signature. Same with guitar playing, and video games. Standing causes stabbing pains in my ribs. My hands get icy and my feel too. My neck feels like a tightened spring, stiff and achy, along with my other joints.
Yet, I can think through "some" things well. However, when I had testing done across the board, I had deficits primarily in the temporal lobe and prefrontal lobe, worse on the left than right. The Brain SPECT scans are clear now, and yet I still have many of the same symptoms. I could write fine online before I was treated -- even at the worst of my illness, but I still can't add or subtract easily. I have trouble with visual spatial recognition, and retrieval of information -- like most of you.
It's like my brain compensated, allocating skills to certain areas while other areas remain deficient. My short term memory is poor. I often forget my own phone number when I call an office and they ask me "What number can I reach you at?" I got a cell phone because I'm on SSI, and I've had it for about 6 months now, and I don't remember the number. I figure I'll just use it for outgoing emergency calls anyway.
It takes me ten times longer to learn material than the average person, but because I'm so persistent, I study ten times harder to encode and take in information. I've been like this my whole life. I can't draw or paint, or do anything that requires creative visual material. When I try to see an image in my head of something, it's usually grayed out, and blurry -- difficult to visualize anything.
It's little things like that which most people don't notice. Or the severe depression, insomnia and other central nervous system problems. The abnormal mood changes and frustration tolerance.
Some parts work well, but then you have all these other things wrong. I look healthy aside from the gut that won't go away no matter how much I exercise and diet, and the balding (which doesn't run in my family) from the inflammation and the huge raccoon eyes, no matter what, even if by chance I do get reasonable sleep (which is rare).
It's like, most of my symptoms that allow me to walk and talk are "tolerable" -- I have all these other high, or severe symptoms that cripple other areas.
Oh, and typing allows me to edit. Without that, I'd sound like a moron. I'm sure others can relate. I can't spell worth a damn.
quote: btm03Sometimes a lot of patients don't realize how far they've come. A subjective number representing a % of functioning is not necessarily an accurate indication of where the patient is at.
Maybe not, but I'm far from well, I know that. I'm not bedbound most days, but I am homebound most days.
quote: In any case I wish you luck and better health!
Thank you.
-------------------- 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.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:sixgoofykidsThat was what I said ... I work way to hard to keep lumps out of my @$$ to use a drug like that! Amoxy was very unappealing.
I'm sorry, I can't say. It was part of the deal. Someone highly trained.
I hear ya. I probably know the person too. Give me a clue? East coast or West Coast?
quote: sixgoofykidsIn rereading what I said, I realize I was unclear. it was when my health declined that he'd put me back on drugs. At the point we were discussing IV, I was actually open to it, but I see your point.
Sounds reasonable to me. You have to go with your gut. Listen to your body.
I see. Working it out in my head is tough since new information is constantly coming in. Once it's all settled though, I'm sure I'll know the right route.
quote: sixgoofykidsLMAO! They aren't as bad as they sound and they really help a lot of people.
I think it can most likely work either way. I think for me it came first. I really seem to have a family history of it symptom-wise, though I'm as likely to convince them to look into this as I am to have them realize their other symptoms are from Lyme.
They don't really know for sure. Are people with this condition more likely to get Lyme or does Lyme cause this condition?
It's very strange. I'll look into it. Good news is I don't have the "genes" that are often implicated in causing ongoing Lyme Disease problems.
quote: sixgoofykidsIt's a strength for me, too. It's just taking pilates classes and teaching them are sooo different!
Maybe you like a challenge?
I think so. I'm sure you'll get the hang of it. In a way it's probably undermining your own techniques that you've been used to. You have to focus on others and that adds a huge new dimension to your own workout. I think you're right about the challenge. Unfortunately I never overcome it since all those areas are ones where my Lyme (and others) interferes with my ability to master the task. Guitar for example. I can't get past this place I've been stuck for about 5 years now. I finally -- after a year of trying -- learned how to play and sing at the same time, but I can only play rythmn, and if it's even slightly out of sync vocally, I can't perform it.
It's **** like that, and I think It's my "smaller" version of pushing, like so many patients do physically.
-------------------- 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.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I haven't read through all the recent posts on this thread so forgive me if I"m repeating anything that's already been said.
I think the crux of the matter for many of us is immune system functioning. We need our immune system in Th1 mode.
Some infections can make your immune system tip over to a Th2 response and we need a Th1 response to help get rid of lyme. One very helpful book that explains most of that is Dr. S's book, "The lyme disease solution". http://www.lymebook.com/lyme-disease-solution
To illustrate the need for a th1 response, there is a mice study that showed that sub-toxic levels of mercury make it difficult to get rid of lyme because of it's affect on the immune system. They specifically mention that you need a Th1 response to help get rid of borrelia. I believe exposure to mold, including mold in food is another immune system issue. Actually, according to some of the studies that I've read, seems like anything that depletes glutathione can tip the immune system over to th2. Here is the mouse study. http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/57277?
If you haven't already read it, consider reading "Insights into Lyme Disease Treatment" By Connie Strasheim. It's interesting to read what each doctor thinks works best. http://www.lymebook.com/insights-book-connie
I think parasites are a big issue and if you have costant exposure to mold you will likely not get well. I have both of those issues and am dealing with them now. I'm seeing good improvement with another round of babs treatment and anti-parasitic treatment. I think the key is finding the issue that is making it hard for *your* immune system to function effectively.
Seems like the genetic issues are huge for some of us too probably because of their effect on glutathione. AND if you are in treatment, and you are of the genetic type that does not make enough antibodies to get rid of borrelia and/or mold toxins, then you must continue to take binders. IF you have these problems it is an on-going treatment, not one that you can treat and be done with. One or 2 doses per day is not enough. Minimum 3 doses per day is needed from what I've read and from my own experience.
One last note. I'm not sure why you are waiting to treat yourself with rife. My neuropathy started to come back this past 6 months despite my hefty abx treatment protocol. Rife helps a LOT. The burning feet start to come back, I rife and within a few days it's gone. Rife can be used to move your lymph system and to help with other infections. Many other things too.
I think I've mentioned this before but muscle testing of some kind is very valuable. It's not perfect but can be extremely helpful.
I'm hoping that you find the answer for yourself and your girlfriend. I'm still looking for answers myself. The more reading I do, the more I think the th1 functioning of the immune system is critical. I don't think IV abx is going to solve the problem if your immune system is not functioning properly.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
i definitely feel your pain..physically and frustration wise. i'm looking for the "answer" to all this too.
Posts: 94 | From ut | Registered: Jul 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Can someone instruct me on the proper frequencies to attempt should I begin this process with Rife therapy?
Are the numbers in Bryan's Rife book appropriate, or do you have specific ones you use that have worked?
-------------------- 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.
For the burning feet I personally need rickettsia frequencies but someone else will need frequencies for whatever is causing their problem.
Some of the frequencies that I've needed throughout have to do with viruses. Also lymph movement and lysine stimulation. Once in awhile I need lyme but I'm already on pretty heavy treatment for that so it seems to be covered pretty well which may be why I don't muscle test that I need lyme frequencies very often.
Start VERY slow as some people have a big herx. Some say 1 minute is long enough until you know how you respond. With muscle testing I do very long sessions - yesterday I did 2 1/2 hours. I think that is unusual and not the experience of most people.
Bryan's argument not to use rife and abx together does not make sense to me. He contends that abx will drive borrelia into cyst form. From everything I've read, anything that threatens borrelia drives it into cyst form. If rife kills borrelia, that is a threat. Just my opinion and again, I base my rife treatment on muscle testing and I find via muscle testing that it is perfectly fine for ME to use the 2 treatments together.
edited to add: I have Bryans book but I don't use it to pick frequencies so I can't tell you if they work or not. Again, it will depend on what your specific issues as to which frequencies would work best for you.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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