I am up all night. i can not sleep. I a crying. I am in so much damn pain. I have been treating quite aggressively for 3 weeks straight.
I have not wanted to really talk about this because of the controversy but I am going to Envita. I am on IV Zithormax and IV Flagyl and I am doing the full protocol there. I am doing IV EDTA and and IV Silver and Peroxide sometimes with also nutritional IVS and Cold Laser Treatments for Detox support.. (the cold laser kicks my but and I do them on Fridays and do not get up out of bed usually for days). Til I go back on Tuesdays.
I have had a rough few weeks to start and just last week I had two short days that seemed a bit better and then i crashed and burned. Since Friday I have been in bed and not just sick a little. A lot. and I am having horrible thoughts and not wanting to be here anymore..
I know i will pass. But this is hellish.
I need some relief! I though at times my other doctor has given me a medrol pack that really calms things down.
I am on MS Contin and have Lortab for pain but its not helping. I have MS Contin Immediate release and i took 8 times the dose for breakthrough and I do not get relief.
How can this be causing so much pain and hell. Is this a good sign? They say the EDTA is breaking down the bioflims that we all talk about. I also am on a product that is a natural EDTA goopy stuff that I disolve and drink prior to doing the IV Flagyl I do at home. I do not know if I should stop treatment or keep going. Out of money anyway very soon. I sold my car and gave up every dime so far. Please do not be negative and bash them. I went on my own accord fully knowing the risks and that there are mixed results there. It is not their fault. Really. I am not blind to the fact that what they do does not work for some and does for others.
So if you got any ideas for me forward. From those who have been through this for so many years.
I have been sick 10 years and treated with orals for the last 5 years prior to a month ago. Then I got the IVs going.
I bought a rife machine and it is on the way. I have done and am doing small amounts of Salt C along the way.
The harder I try the worse I get. Everyone says its a good thing? When do you draw the line? Is it a good thing? I have not slept or ate in 3 days. I did try to make one smoothie and put in pineapple and soy milk and coconut oil and flax seed and protein powder. But I am so nauseous from the pain and fatigue I am stuck.
Should I ask for something else for pain? What can work when I am already on such narcotics (which I really hate taking and wish i did not have to).
I have to find some relief. I cried and cried reading brandi post and I feel so much for her and I feel so much like. I hold it in and try to be strong. I try to go day by day. But it getting to be so much. I really do not know if I can make it through this to the the other side. Day in and day out and nigh after night the pain is so horrible.
I will take any advice on pain relief. I have taken many baths and do coffee enemas...
Anyway. Thanks ahead of time. I have mixed emotions about this board as I have seen many who fight and that turns me off. But I have seen much support too and caring and I have met some wonderful people.
Maybe this is the storm before the clearing? I can only hope? Is it? I wish God Could Tell me. I am trying with all my might. I do not know when to blow the whistle. Do I stop this whole Treatment or do I keep going? I do not know what to do. I know I can not be like this and survive. I will end up downing all my Morphine and hope to fall into a painfree sleep. Sounds so nice actually. I am not saying I am going to do this. I am not planning on doing it. But my mind is there. Right there..
God Bless You all. Take care Spring Showers bring Flowers!
I am looking for those Flowers!
Deb
Posted by Abxnomore (Member # 18936) on :
Don't ever feel that you have to worry about trying something that others don't agree with. I say good for you for trying.
It sounds to me like you are getting some very aggressive state of the art treatment. IV flagyl is tough but I think you have made a very good choice by choosing to do this.
I say be strong, as you were in making this choice, talk to them again about what they can offer for the pain and just hang in there.
I think this treatment will help turn you around and you will start to see the flowers. Don't doubt what you have chosen to do. Fighting this illness is not easy and IMO you have to go thru a lot of pain and pure hell to come out on the other side.
I'm routing for you and I'm sure everyone else will be too. We all want your experience to be a success. Stick it out, you can do it. Stay focused on your goal and that is to get well.
You can't give up now that you are getting such excellent treatment. It WILL get better. Stay positive in your thoughts. Posted by Ocean (Member # 3496) on :
I don't have any advice for you, but my heart goes out to you.
I agree with Abxnomore, that you shouldn't have to feel that you will be caught in a heated discussion just because you did what you felt was best for you!
I am sorry that you are in so much pain. I am sure that the doctors and nurses at Envita have a lot of experience with what you are going through. I e-mailed with a lady who had success with Envita this past spring and she went through a lot before she got better, but she did get better!
Please keep us posted on how you are doing.
Ocean
Posted by schnuddelka (Member # 8031) on :
The evil of this disease is that we have to get sicker before we get better. Find the light at the end of the tunnel!
I ask my doctor if I can take a holiday from the medicines when it gets to be too much. Then I take two to four weeks off, and start again. Kind of like my own pulse therapy.
Make sure you have a good support network around you. I find that distraction is my best medicine when I get really down.
I take amitryptaline to sleep at night, but talk to your doctor about other options.
Good luck and hang in there!
Posted by Dawn in VA (Member # 9693) on :
Perhaps a brief holiday, even if it's just a couple of days, might not be a bad idea if the increase in pain, insomnia, etc. is from herxing.
Pushing through it when possible is definitely a good thing IMO, but your body can also become overly burdened with all those pro-inflammatories (cytokines, interleukins) flailing about if you're herxing really hard and not getting them out of your system. In that case, maybe not so good...
Are you on any endotoxin binders (cholesterylamine (sp?), clay, etc.), detox plans other than the EDTA, or at least some glutathione?
At any rate, hang in there! Get those little buggers!
Posted by D Bergy (Member # 9984) on :
I do not know much about cold laser treatments, but I know they are frequency based. Maybe they could try a 2 Hz equivalent frequency. Or when you get your Rife machine, you could try this yourself.
There is scientific evidence that this frequency reduces swelling of the joints. If it is swelling that is causing the problem, this may help.
100 hz is also a joint pain relieving frequency, but not as effective.
Run 2 Hz for twenty minutes to a half hour. I have some evidence that this works, but I am in the early stage of testing.
Dan
Posted by Lymetoo (Member # 743) on :
All I know is that increased meds will equal increased symptoms (pain).
Only you know how much you can tolerate. If you can't tolerate, then you need to back off.
I will be praying for you to find your way and know what to do.
HUGS!!!!!! Posted by bettyg (Member # 6147) on :
Posted by gwb (Member # 7273) on :
Have you considered morphine for pain relief? Sometimes it works better than lortab or the other stuff. Just a thought.
Gary
Posted by lymetwister (Member # 19590) on :
I would back off some of those treatments and let your body recover. I know those bad thoughts all too well and yes, it does pass.
When I finish my Abx, if I don't get any results, I'm going back to Rife and Salt/C.
Posted by Abxnomore (Member # 18936) on :
Springshowers, If you are at the treatment facility, I would speak to them and get their take on things. Then analogize it and see if it makes
sense to you. You are paying lots of $$$ to get a specially designed protocol, so make sure you take full advantage of it.
Hang in there, you may soon be past the worse part. It looks like a good protocol to me.
Take one day at a time and let's hope this treatment will help you turn that corner.
All the best to you Posted by seibertneurolyme (Member # 6416) on :
I see 7 treatments listed --
IV Zithromax
IV Flagyl
IV EDTA
IV Colloidal Silver
IV Hydrogen Peroxide
Nutritional IV's -- probably similar to Meyer's cocktail
Cold Laser Treatments
I know from hubby's experiences that there is no way he could just jump in and do all that at once. The only way he could tolerate something like this protocol would be to start with 1 treatment and add things 1 at a time.
In your case I would either stop everything for a week or so or cut out about half of the different treatments for a week and see if things improve. Since you live in the area there is less need for you do everything in such a short period of time.
As for the individual treatments -- hubby tried for almost a year and never could really tolerate more than 300 or 600 mg of oral Zithromax 3 times per week. This med alone would wipe out many Lymies.
IV Flagyl -- hubby is having a hard time tolerating oral Tindamax which is supposedly milder than the Flagyl. It causes major insomnia problems for him -- have no idea what the mechanism is for that. Doesn't seem to be a serotonin issue though. Need to remember that this med can cause peripheral neuropathy -- don't know what your dose is or if that is one of your problems.
IV EDTA -- hubby did one treatment about 4 years ago and there is no way I would let him repeat that without building up the dose on oral EDTA first. We recently tried 150 mg oral EDTA 3 times per week but stopped that for now until the tindamax issues resolve.
IV Silver -- hubby started with I think it was 1 teaspoon orally and then worked up to a couple of tablespoons orally before switching to IV. He eventually did 2 ounces 2 times per day I think IV -- for him it just seemed to stir things up and never really helped. We stuck with the IV's for 3 - 4 months. He may not have been on any antibiotics at all at the time.
IV Hydrogen Peroxide -- did probably 50 or so in total -- think this was a total waste of money. This was before antibiotics.
Nutritional IV's -- did probably 50 or so of these -- 3 - 5 times weekly for a couple of months. Helpful, but very costly. Also before antibiotics.
Cold Laser Treatments -- had a couple but couldn't tell that they did anything at all. Before antibiotics also.
As for things that might help -- possibly Vitamin C IV's.
Also sarsaparilla is very good for detox reactions -- hubby normally takes 4 capsules 3 times daily. If he has any nerve pain or body aches I add in an extra dose or two of 4 additional capsules each. Can go much higher with dosing, but start slow.
MSM -- for the sulphur. Will probably help if epsom salts baths help. 1500 mg 2 or 3 times daily to start. Can work up to 2000 mg 3 times per day.
SAM-e -- The best thing hubby has found for mood issues. Works much better than antidepressants for him. Also helps with methylation cycle. Jarrow brand from Vitacost is good. 400 - 600 mg daily on an empty stomach in the morning.
Licorice root -- the best herbal steroid. May help balance cortisol levels. Just remember that it could raise your blood pressure. Use the powdered herb to make a tea and it should help the G.I. heal as well.
St John's Wort oil rubbed on the skin might also help with nerve pain. Could mix that with something like Icy Hot.
Please consider slowing down the treatments so you can get some positive benefit from all that money. I honestly think overdoing treatment is not worth it in the end.
You also need to remember that pain meds are some of the hardest medications to detox -- they are adding stress on your liver. That is just one more reason to slow things down in my opinion.
Good luck and let us know what your doc suggests.
Bea Seibert
Posted by springshowers (Member # 19863) on :
Thanks for the Great ideas. I am trying to hold out. I am on Ms Contin and had to really dose up to get there and slept all afternoon after treatment.
It is a lot. The first 3 weeks I was herxing but tolerating it and then this week I hit a wall. I was able to take off 3 days over the weekend and actually felt worse. ???
I did talk to them today and have an appt tommorrow too with the doctor.
The nurse briefed him and they added Ozone Saunas instead of laser to see if it is easier on me and then they added Welchal. Not sure how that is spelled. I have takend cholestrymine and assume its the same sort of thing. They think I am just too nuerotoxic from all the killing off. Sounds right?
I may ask to stop some of the treatments and spread it out more. I will analyze that with them tomorrow.
If I do not change something I think it will end up getting too severe for me. And then I may just quit. The thoughts that come to the mind are so bothersome when things get so bad. I am a tough person. I feel I can tough things out. But there is a line and I have been crossing it lately.
In those IV treatments there is actually more than you think too. There is DMSO in the Peroxide and in the EDTA there additional ingredients I was told. The Peroxide and Nutritional ones are only one time a week and the others on other days during the week and Flagyl every single 2xday 750mg.
Well... Yeah its intense. Its weird though. It is a different feeling than any other treatments I have ever had. I know it is doing something and it may be that I am one of those who just does not detox correctly.
Besides those treatments I am on ARtemesinin and a whole slew of other orals that are to kill candida and fungals and for immmune support and probitics green drinks etc. THose along hit me hard the first week.
I got to remember how much new this is and how much total it is adding to my body and hitting it.
Thanks for the support. I means a very lot to me. It really does. I have learned a lot from so many of you here and you do not even know how much.
THank you
Posted by Abxnomore (Member # 18936) on :
Sounds like a fantastic protocol and that you are handling things well considering how difficult killing of this spirochete is. I get the sense they really know what they are doing and like the approach they are using.
You hang in there......Looking forward to when you have turned that corner. The first part is the hardest, but it will get easier. Posted by gemofnj (Member # 15551) on :
spring,
i am so sorry to hear you are in such dreadful pain.
maybe too much in a short period.
perhaps a small reduction in meds and increase the detox might help.
heartfelt wishes for you and only hope that you will soon feel some type of relief very soon.
will be thinking of you and saying a prayer for some relief.
Posted by springshowers (Member # 19863) on :
Thanks Guys. it helps to hear that you think things sound positive in the protocol. What do you think increasing detoxing would entail? Ideas? II do coffee enemas, now on Welchal, I am going to do the infared ozone saunda, I have the cold laser too. I drink a lot of water, near a gallon a day I try for. I take baths with salt in it.
So what else can I do I can not think of?
Posted by springshowers (Member # 19863) on :
It took my last energy but I read this one article and i think i will pull out the cholestrymine as well I have like 4 cans of it. I did not notice much help in the past but because i take so many things I was afraid to take it during the day so i would get up in the middle of the night and down it.
I might do that again. I am going to ask the doctor about running the genetic test too.
Any and all Detox ideas very appreciated because i know you all are right about the Detox issue. I think I am having a rough time and most likely alway have and why have treated for years and not able to get well.
Cholestrymine does the same thing as Welchol. Are you going to do both? I don't think you should and I think you should run it by the doctors at the center to make sure you don't do anything to interfere with the protocol they have designed for you.
I'm sure they have some plans for detox. I would talk to them about it. The Ozone Sauna is an excellent way to detox. Just take one day at a time and do the protocol as they designed it and gather all the information you need from them to calm your thoughts.
Posted by seibertneurolyme (Member # 6416) on :
Other detox suggestions --
Ionic foot baths.
Lymphatic herbs -- red root, cleavers or poke root -- or lymphatic massage (manual or there are machines such as Lymphstar Plus or something like that) -- or even just sitting on the edge of the bed and bouncing up and down for 10 or 15 minutes will move lymph.
Other binders include -- activated charcoal, apple pectin fiber or bentonite clay.
Add lemon juice to your water.
Chew on parsley.
Sure there are more, but ai am getting sleepy.
When hubby did his IV Rocephin I added prescription DMSO to that per his doc -- he defintiely could tell the difference when that was included in the IV. And of course I could smell it -- he smelled like sweet corn all the time.
Bea Seibert
Posted by springshowers (Member # 19863) on :
Ohhhh that is what the smell is..!!
Thanks for those ideas.
All these things I have done in the past. But dropped them. It gets so hard to do it all..
Getting sleepy too. Sadly that does not mean i will sleep. Thats a whole other story and you all know how it is.
God Bless you all and thanks again for the support.
I got a message my mothers stage four cancer is now progress again and my family is calling for me to be the one to go there. OThers are not able or live in other countries.
I called a clinic there in NM who does what ENvita kinda does and found ONE doctor who might take me. So I am having to shift greats and may have to go there. Her house though is an Hour away from any doctor and two from an airport.
I am going to have to dig deep for the energy to do this but somehow I know I have to.
THanks all.
There also is only dial up there and I may loose access or have very limited access on the internet and such..
Deep breath.....
Sigh Blessing
[ 09-30-2009, 11:50 AM: Message edited by: springshowers ]
Posted by springshowers (Member # 19863) on :
Well I have good news.
Things have been improving each day this week.
I am this week doing Ozone Sauna treatments instead of Cold Laser treatments and so far so good. I just did not and could not right now endure the harshness of my response to the laser treatments.
As well i am breaking through the major herxes of the IV zith and IV flagyl.
I am a bit under the gun as I have two weeks left of treatment and I have to get packed and leave any day now to be with my mother. The timing might just work out.
Even if I end up on another herx cycle I am noticing each time I cycle when I come out of the herx which lasts about 3 days I feel better each week.
I am positive that these treatments have very much hit and cleared out more of my infections than anything I have ever done for years and years.!!
The next two weeks will be very telling. I hope to Turn the Corner! Its been a rough ride. But at least a ride.!
Thanks for the support all..
Posted by Abxnomore (Member # 18936) on :
This is wonderful news!! I think you are getting excellent treatment. Just take it one day at a time and I think the center will know just want to do.
No need to burden yourself with additional stress, as you clearly have enough. Let them do the thinking. That's what you are paying them for.
Thanks for sharing this with us. Keep up the good work and I wish you continued success
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