posted
I know many believe there is nothing to this therapy, but I met someone recently who had Lyme disease (a good friend of a good friend) and he attributed his apparent "cure" to high dose IV vitamin C infusions. He was very ill at one time, and was wheelchair bound. He now seems to be fully well. He's no dummy...he's a Yale grad and very successful. He said that if it were going to work for me, I'd know right away, because I'd start feeling better quickly.
So I decided, what the heck, if it worked for him, maybe it would work for me. I mean, what do I have to lose? It's not that expensive, and seemingly has no toxicity to be concerned about.
I had my first infusion last Thursday, 8/27. It was only 25gm, with the plan to increase the next dose to 37.5gm then to 50gm on a once a week schedule.
The nurse had a hard time with my vein and the IV infiltrated. I think at least 150ml of the solution went into the arm tissue instead of the vein. It was very painful and swollen. In fact, it hurt so much that it's still a little tender there, 8 days later. But I digress. She restarted the IV in another spot and the rest infused w/o problem.
Toward the end of the infusion, I started to herx a little, but that night I felt great for a while. My brain hadn't been that clear in ages. However, the next day, I crashed and felt horrible. I slept most of the day. My body, joints, and head ached. My eyes hurt & drooped. My breasts and nipples were very painful. Saturday I felt a little better but still not good. Sunday I started feeling better. I viewed this as a big herx.
Yesterday I had my second infusion (37.5gm). I herxed again, but not nearly as severely as the first week. Most notably, my eyes hurt and drooped a lot, and my breasts and nipples hurt again, but not nearly as much as last week.
I don't know about the rest of you, but my libido has been almost non-existant for at least a couple of years. But this morning I had an erotic dream and really "felt" it. Sorry, I hope this doesn't offend anyone, but it was kind of amazing to me. Besides that, my head is feeling much clearer than "normal", i.e., "normal" for someone w/Lyme.
I know some may say that they've had no results w/vit C, even this same dosage, but maybe the effect is dependent of body size. I'm 5'0", small frame, and about 114 lbs, so maybe I don't need as large a dose to be effective.
Will vit C cure me? I don't know, but it seems to be doing Something positive. Right now the goal is to do a total of 6-8 treatments.
Just reporting on what I'm doing, fyi.
Patti
Posts: 975 | From California | Registered: Apr 2007
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lymetwister
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My Personal opinion is that your boosting your immune system and perhaps your own body might be going after the buggers or at least having them stand back.
This is the goal of the Salt/C protocol, so I would think your own the right path.
You might want to try adding some salt. In my experience I have Herxed hard from both. Remember, Vit. C is water soluable. The half life is only 30 minutes. Here is a quote and source for ya...
"HALF-LIFE FOR VITAMIN C IGNORED The main flaw - the half life for vitamin C is quite short, about 30 minutes in blood plasma, a fact which NIH and IM researchers have failed to recognize. (Half life is the time it takes for half of a substance to be removed from the body.)
Because vitamin C is used up rapidly, a very high single dose of vitamin C would not achieve the same concentration in the blood serum over time as two divided lower doses. Hickey and Roberts claim many negative studies using high-dose vitamin C have failed to recognize this fact and have therefore mistakenly concluded that high-dose supplemental vitamin C is ineffective. "
posted
Glad you are having a positive response to the Vitamin C.
However, I think the following claims in regard to IV Vitamin C are overstated -- otherwise a lot more people would have left these boards since the "cure" was first proposed in 2005.
I think the highest dose hubby ever did was 25 grams, but he did do that 6 days per week for the 2 months he did IV Rocephin.
Hopefully your doc also has you eating something either right before or after the IV or even during the IV. The main complication people often have is hypoglycemia either during or after the IV. Also, many docs put the vitamin C in D5W so it will go to the brain better. I have given hubby IV's with either D5W or normal saline.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lymetwister
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posted
D5W should counteract any Hypoglycemia as the Vit. C does stimulate Insulin production.
One other thing worth mentioning is that Manganese is lowered with these types of infusions which are essential for detoxification of free radicals, in our case, Lyme & Co. toxins that are affected. Perhaps, this is what you are calling a "Herx".
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
A former LLMD was bitten this summer, neurological symptoms (mainly face numbness) ensued.
she has done the Vit C IV off-and-on. Her symptoms improve when she is doing it, presumably b/c of the immune system support. But when she stops, they come back.
She said it's not practical for lyme patients because it's not a permanent fix that costs alot too.
Everyone, like her, has their own experiences but she is endeavoring to do everything she can including a modified Salt/C protocol.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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WildCondor
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posted
High dose Vitamin C can mess up your insulin and drop your blood sugar to dangerous levels. It IS expensive to do it as well. You don't herx from vitamin C, you herx from antibiotics! It can help the immune system low doses, like 10 grams a week. If your going to do the Vit C ivs, have your doc add in the B vitamins and magnesium to the cocktail, that stuff will help too. I did a ton of IV Vit C in high doses (up to 100 grams) before I knew I had Lyme and it did nothing but hurt my veins and cost $.
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emla999/Lyme
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I don't know whether IV Vitamin C has any effect on Lyme Disease or not but at the University of Kansas Medical Center IV Vitamin C is used as a treatment for cancer.
Amanda
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posted
I posted a thread recently that a few people taking high doses of Vitamin C got worse, 2 died. There wasn't clear evidence that the Vitamin C did the killing, but clearly it wasn't helping those people.
high vitamin C will increase your ferretin (iron) levels. If you have a gene that causes you to accumluate iron, vitamin c is absolutely contraindicated. Iron toxicity can be serious, and has some common symptoms with lyme. Low blood sugar can also feel like a "herx".
I know that some people got a lot of benefit from high doses vitamin c. Just make sure you are careful, and check your blood work periodically.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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Abxnomore
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IV vitamin C drips with additional vitamins added such as B, magnesium and whatever is deemed to be needed are extremely helpful. C brings down inflammation, will kill viruses, support your immune system and does many things.
It's a great adjunct therapy to be used along with what ever Lyme disease protocol you are using.
However, it will not cure you of lyme and co's.
It may make your blood sugar drop but you should be advised to take along some nuts or some type of protein to counter act the low blood sugar if you are prone.
In the right hands it's an excellent adjunct therapy and in all my years have never heard of any one having trouble with it. I've only seen and experienced the benefits.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Thanks for the responses. They warned me about the hypoglycemia ahead of time, so I've been prepared for that. I'm pretty sure they're adding B vitamins to this, I'll have to ask about the magnesium. One thing I failed to mention is that the "friend of friend" said that he got IV hydrogen peroxide after each IV vit C.
My Dr seemed hesitant to do this, saying that the vit C converts to H2O2 in the body anyway, so he didn't think that should make any difference. Perhaps it does. I wonder now if it's because he doesn't have experience with it.
So far it's making me feel better, I think. We'll see how the rest of it goes. If after it's all done, I relapse, then maybe I'll try again w/the IV H2O2 w/another Dr.
In doing another internet search, I've found that another Dr. in his office does it (the H202). I'll have to talk w/my Dr about it at my next appt.
I know it's not the cheapest thing to do, but it's also far from the most expensive. Each IV costs about $120 x 8 = $960. I guess w/H202 would be approx double that.
FOF has been in remission a # of years now. He said that he followed up a couple of times at, I think, the 6 month and 1 year points w/another course.
Compared to what I've spent on this so far, it's a very small sum.
Abxnomore, are you really on no antibiotics as your handle suggests? If so, how are you doing this? I'm really sick of taking antibiotics. I'm having a hard time w/it right now, I think because during the summer I eat less because of the heat, and several of my meds (doxycycline esp) have to be taken w/food. So if I make myself take them w/too little food, I become nauseated, making it that much more difficult to take the next dose.
Posts: 975 | From California | Registered: Apr 2007
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Pinelady
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posted
psano I read about this treatment saving aboriginal kids lives
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I had my 3rd dose of IV vit C yesterday. The dose was increased to 50gm. I hadn't really thought about the IV solution being used until I'd read Lymetwister's post re: adding some sodium to it, and checked last week and found that the RN was giving it to me in sterile water.
So I decided to ask her to give it to me in normal saline. Then I'd essentially be getting IV salt/c. Plus normal saline is isotonic w/the blood and I thought it might reduce some of the irritation I'd had at the infusion site with the previous two infusions.
She didn't want to give me normal saline, but agreed to give me 1/2 normal saline. (0.45%NS)
This IV brought back a terrible tremor that makes my head shake, almost like parkinson's, as well feeling it throughout my body. It's accompanied by anxiety and just feeling poorly. I don't know if this is what others refer to as vibrations. I can see how it could be described that way too. I felt jittery, my voice became tremulous and my teeth were on the verge of chattering.
The tremors started well before the end of the IV and continued for some time after. I felt unable to drive myself home, so I laid down in my car for a while until I felt a little better, and then took the streets home instead of getting on the freeway. I hadn't experienced that tremor for over 4 years. It was a symptom I got several months before I was diagnosed.
I feel that it was a huge neuro herx, and that it hadn't happened with any of my antibiotic therapy to date means that this IV hit a deeper level than all of the other antibiotics/herbs/etc.
I still feel a little jittery right now. I think that the IV solution being used for the vit C may make some difference in how much benefit one can get from high dose vit C. If one has been getting their vit C in D5W or sterile water or something that doesn't have sodium in it, it may not have the same effect as infusing it in NS or 1/2NS. Of course I could be wrong, but it seems like a possibility. Besides turning the vit C into a salt/c protocol, the 1/2 NS also seemed to help prevent irritation to the point of venipuncture, and my arm didn't hurt at all when I was done.
Her use of sterile water might be one of the reasons it took so long for that first infitrated IV to go away, due to the lack of tonicity with the body.
Posts: 975 | From California | Registered: Apr 2007
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posted
My experience with IV vitamin C was nothing but positive as it was the only thing that ever gave me a clear head and made me feel energized.
But the effect was short-lived and I couldn't afford to keep doing it, but at the time I wished I could just stay attached to it forever because of the sense of well-being it gave me.
Since we all may react differently to the various treatments out there depending on what deficits we have, gather as much info as you can and maybe give one a try if you think you are a good candidate for it.
I do wonder how I would have progressed if I could afford to do it regularly. It's good to know that the results vary with the individual, so our expectations can be realistic.
Posts: 590 | From Canada | Registered: Oct 2007
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Pinelady
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posted
How long will it be before we are all hooking ourselves up.
lymetwister I did not know this: One other thing worth mentioning is that (Manganese is lowered )
with these types of infusions which are essential for detoxification of free radicals, in our case,
Lyme & Co. toxins that are affected. Perhaps, this is what you are calling a "Herx".
Funny-lyme has a lot of manganese in its makeup.
One of the few thing identifyed it does have. So apparently it needs it. Take it away and yes you will herx more hurting it.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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edit: I just wanted to add that my iv does include magnesium, calcium and trace minerals according to the iv nurse.
Posts: 975 | From California | Registered: Apr 2007
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Pinelady
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Manganese for me.
B. burgdorferi is one of the few pathogenic bacteria that can survive without iron, having replaced all of its iron-sulfur cluster enzymes with enzymes that use manganese, thus avoiding the problem many pathogenic bacteria face in acquiring iron. http://en.wikipedia.org/wiki/Borrelia_burgdorferi
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Today I had the 4th dose of IV vit C. I considered not getting it at all because I was still suffering from shakiness which is best described as "shivering". That included breathing, my brain, everything. I'd like to add that some of my meds were changed this past weekend, and have helped a lot, but I was still shaking. The shaking got a little better every day, but it hadn't gone away. I'd decided that if the shaking hadn't worn off by my next infusion, I should put it off until it went away.
I called the office and asked if I could see the Dr before having the IV. His appointments were all booked, but the nurse said she'd pass my message to him so I gave her my story and concern about waiting a while to get the next dose. She called back to tell me that he still wanted me to get the IV today, but would reduce the dose.
When I got there, the IV nurse said that the Dr told here that he thought that what I'd described was just hypoglycemia, but I told her, no, it definitely wasn't. While I was waiting for the IV to be prepared, I started eating some chicken that I'd taken with me, and my hands were shaking a lot. The lady next to me was watching me and I said "I'm kind of shaky today", and she said that's alright. The dose was reduced back to 37.5gm. I didn't notice until it was almost done that it was put into sterile water instead of 0.45NS. Oh well.
During the infusion I started herxing again, but this time it was that my eyelids started drooping. They weren't drooping when I got there, but by the time I left the left eye was completely closed and the right was just a little open. The back of my neck started feeling stiff and it was hard to turn my head. In the meantime I was still shaking. But as the infusion continued, I noticed that the shaking didn't seem as bad.
When I left my eyes were still drooping, but shortly after getting home (about an hour later) I realized that I wasn't shaking anymore, my eyes weren't drooping, and my head was clear. In other words, I felt normal! My head hasn't been without noticeable pressure on the eyes, grogginess, or frontal discomfort in years.
So far it's about 5 hours later and I still feel great. Well, I lied. I'm just starting to feel some slight pressure on my eyes and that frontal brain headache. But still, I haven't had that much time really feeling normal in ages. I'm so happy right now. I'm actually optimistic about getting well now.
I know this may not work for everyone, but I just wanted to share my experience.
Posts: 975 | From California | Registered: Apr 2007
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Pinelady
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posted
psano2 that is great. And it sounds like you have a
wonderful doc who knows what he is doing. Eating a
little protein every couple of hours sounds like
it could stop the hypoglycemic reactions. Good job.
I do so hope it works for u.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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gwb
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posted
psano2, thanks for sharing your experience with us. I had a Meyer's Cocktail drip about a week ago and it gave me a much needed lift. Plan to do it again next week.
It's got all kinds of vitamins in it, including C, B-12 and other B vitamins, magnesium and some other things that I don't remember.
I don't expect any cures from this, but anything that makes me feel better is definitely worth it (as long as it doesn't do any harm of course).
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