Topic: IVIG made me Herx bad, better now after tap water enema. Please READ THIS !!!
lymetwister
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Member # 19590
posted
Ok, so I have been reporting on the Reprieve I've been getting with the first 2 doses. Well last night, I got into bed and started having what felt like Air Hunger.
I was just laying there with my CPAP on and couldn't get my breathing right. I than began to have pretty bad anxiety which I took a 0.5mg Xanax for and was able to finally fall asleep.
Woke up with the normal shakes I get and was pretty calm after taking my morning Klonopin, but then the Headache came back on, but the Vertigo has been good to me today.
I started belching and getting nauseated about 2 hours ago. To me this felt like the same Nausea and belching I get when I have a ton of die off from Salt/c and Rife.
So, I went and did a 2.5 Liter tap water enema and to my surprise I found hundreds and hundreds of those things with the red legs in the toilet. The same exact things that are on lymephotos.com under Borellia.
I managed to get in touch with the site owner of Lyme photos and she told me that she called them Borellia because she didn't know what else to call them and she wasn't sure what they are.
Even still, she told me every photo on her site is something that came out of her while on Salt/C.
Keep in mind, I have been off the protocol for about a month since I did that stupid hot tub thing, so this can only be the IVIG causing this now.
My nausea is now gone, as is the terrible anxiety that had come over me. I still have a headache but it no where as intense as it was before the huge enema. I would imagine dose #3 will kill more off and get rid of the remaining headache.
This is good stuff, as it proves the IVIG can in fact make you Herx, which to me is proof positive that no matter how it works, it is going after this stuff.
I'm due for dose #3 in about 1-2 hours. I knew if the IVIG was going to help me, I would have to endure the toxin die off no different then if it were Abx, Salt/c, or Rife. It would appear there is no way around the Herxheimer reaction to get rid of this disease. It would also appear that the IVIG is working very similar as an antibiotic would, the only difference being that it's now my own body attacking this stuff.
LT
Sorry to start a new thread, as I wanted to keep my journal in one thread for everyone, but this is so significant, at least to me, that I had to start a new thread so that you guys would be sure to read this.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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bettyg
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posted
sorry you are going thru these rough times. best wishes hugs
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posted
Remember Borrelia and all other bacteria are microscopic.
Don't know what you are seeing, but it is not Borrelia.
Hope you feel better soon.
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lymetwister
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Member # 19590
posted
I know it's not Borrelia, but it's 100% identical to what is pictured on lymephotos under Borrelia. I even put the red flagella looking legs under a microscope and they are double stranded sausage link looking just like what is shown there as well.
I do have one question though. We all know that Bb can only be seen under 10,000 darkfield microscopy. For those of us who have had this for perhaps 20 years or more, is it possible that something that was microscopic could become macroscopic over this span of time ?
I don't know the answer to this question but it would seem logical that the answer could be yes.
Who knows with this disease as it appears to be so complex.
My microscope picture is on the Left and the picture from Lymephotos is on the right. My microscope is a kids scope with a display on the front, so I used a digital camera to get as good of a picture as I could, but if you look directly into the scope it is much clearer.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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lymetwister
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Member # 19590
posted
Major Major Herx this morning from the IVIG, filled with tons of Air Hunger and brain fog like I've never had it. Head pounding too.
I would think this is a good sign as I had tons, and I mean tons more of that stuff pictured above come out of me after yet another tap water enema.
I am not on anything else right now and havn't been for about a month now, so it must be the IVIG. I called the pharmacist just to check if they added saline to my infusion as this could be the cause too, but she said the only additive is sterile water.
These Herx's are terrible, but I guess I must go through them to eradicate the disease.
Much better now after the enemas.
This stuff is amazing !
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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losferwrds
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posted
Hey, didn't you say you know someone that could test that macroscopic die off thats coming out you, it would be groundbreaking if it was some kind of mutated form of Bb. And even not just for piece of mind to know what the hell is coming out of you, I have mostly solid stools but occationally have some loose ones if I don't keep up on my probiotics, but I have never seen anything like that in my toilet.
Aren't any of the those Fry Labs or IGENEX guys interested in taking a look at that stuff or is it a issue of preseving it in shipment to be able to properly analyse it.
Also I was under the impression that IVIG will boost your immune system but you still need to use abx as well am I mistaken, is it a stand alone treatment.
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lymielauren28
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Wow! That's awesome that you're having that kind of reaction - proof that it does work. Like my mama always said, there's more than one way to skin a cat!
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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lymetwister
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posted
I don't think Igenix is set up to examine specimens but I could be wrong. I have sent them to Lab corp and Quest and they both said negative for parasite.
With that said, my ID doc. from a while back went down to the hospital lab and took a look at them himself as he was saying I need a psychiatrist :-)
He then wrote me an apology email stating that he didn't know what these were, but definitely were not normal.
I believe this IVIG is killing faster than I can keep up with so far, so I will do more enemas later today to keep everything moving.
If you've never seen these in your stool, you might want to try Salt/C protocol, as this will for sure give you diarrhea and it was the other way I was seeing these even though I'm off the protocol right now.
I will call Igenix and ask Dr. Harris and ask if he would like to look at these things.
I have spoken to him before and he is very nice. If he has the equipment, maybe I can send them to him.
Have you guys seen Dr. Burrascanos updated guidelines ? He states that IVIG is necessary with Autonomic dysfunction, which I would think is many of the symptoms we all have, i.e. low body temp, tachycardia, etc.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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lymetwister
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Member # 19590
posted
More Nausea, Chills, and low grade fever of 99.5, which again, I have never been above 96.5-97.0 since treating.
I have been doing more tap water enemas all morning now as whenever that nausea comes back, I can tell, it's associated with those things with the legs coming out of me.
Since my last post, I have done 2 more 2 Liter tap water enemas only to have 100's more of these things come out of me. It's like they are dying faster than I can get rid of them.
Every time I empty them out, the Nausea goes 100% away. It's gotta be the toxins causing this. Even my head clears up.
I will try and get a better photo up of these things.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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lymetwister
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posted
Ok, took some photos of these things. The picture on the left shows three of the critters with my webcam. The picture on the right shows one of the red legs at 900x on my scope. It's the best I can do with my limited resources, but these are the things that are making me nauseated as can be.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Pinelady
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posted
Thanks for sharing. Awesome pics. Don't forget to drink lots to prevent dehydration from enemas. Some people actually think they will get hydrated from them and it is exact opposite.
-------------------- 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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Great posts! I have not had the same reaction you are having to the IVIG but everyone responds differently and in your case it seems that things are moving along rapidly. For some reason I always seem to take much longer to respond to medications than most.
My doctor told me that sometimes people can feel like they are herxing from the IVIG but in fact it really is a side effect of the medication (headaches, flu like symptoms, etc) so just make sure to take it easy and get plenty of fluids for hydration. You could be experiencing a herx and some mild side effects. The first time I did IVIG the headaches I got were terrible but since then I have been tolerating it much better.
Looking forward to more posts from you!
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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lymetwister
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posted
David, Headaches weren't a big problem with me for some reason even though most report them. In fact, the IVIG actually got rid of my headaches which were 24/7.
Last night I felt like death and was not good for most of the day yesterday.
I was having air hunger attacks, bad anxiety that even Xanax wasn't helping, very weak in the legs, etc. All of which are familiar to me when I herx.
I did skip dose #4, but I have awaken this morning feeling much much better. The morning shakes I normally get were not present today. I woke up refreshed, the Herx is over, and I feel wonderful in every way.
So, we will go ahead and do dose #4 today and finish tomorrow with dose #5.
I can't remember the last time I felt this good, but it is only 9am where I am and with this disease, you never know if it will last.
Keeping my fingers and toes crossed.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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lymetwister
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posted
Ok, so I did dose #4 last night. I still felt as if I was Herxing, just not as bad.
Symptoms prior to the dose were more Air Hunger attacks, not as bad as the prior day, brain fog, again not as bad, but still there, some anxiety but again not too bad, and slight vertigo.
Amazingly, Headaches are not a problem for me while getting the IVIG.
The Nurse showed up late to my house at 7pm. I was ok with this as I knew I would want to go right to bed afterwards anyways as I wasn't really up to this dose, but I know I have to get it all in me.
Low grade fever 99.3 during the beginning of the infusion, but all was uneventful until about the last 30 min. when I once again felt a big Herx coming on. Major brain fog was setting in, and I starting having yet another Air Hunger attack. I stuck it out and finished the infusion while thinking to myself how nuts this is.
With IVIG, you can't back off once it's in. With Abx, Rife, Salt/C, etc. you can back off if your Herxing hard and it will subside over a day or so. This is scary to me and I don't have a pattern yet to gauge how I am responding.
I am still having Brain fog this morning, and a little air hunger again. Something is definitely going on inside my body since starting the IVIG. Besides the die off in my stool, these new symptoms that come on during the infusion tell me that either I'm stirring up the infection or I'm killing it off.
I am one of those with a huge bacterial load, no doubt about it, so this is going to take some time before I know if the IVIG is working. I would think over the next 2 weeks I would have a better idea. I need to get this last and final dose in for the month.
The Nurse gave me the option to do it today or late Monday. Not sure which way I will go yet as if I do it today, he has to come early and if I wait till monday, he can come late again, which I prefer for sleep purposes.
I will continue to keep you all updated. And BTW, I called and spoke with a Dr. at the CDC re: the Photos above. I emailed them to him and he was quite concerned and he is now having me send samples in to the Health department and a sample will also go directly to this Dr. from the CDC.
He told me that looking at the pictures, they appear to be quite abnormal and he was very concerned of my symptoms and the fact that my symptoms clear up significantly once I get them out. I hope they will get to the bottom of these things as this could be breakthrough treatment with the Lyme. Thats all for now. Hope your all fairing well.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Pinelady
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Wow! You got the CDC to take a look. Awesome.
-------------------- 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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lymetwister
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Member # 19590
posted
Talk about an IVIG Herx.... Whoaaaaaa
It got so bad today after dose #4 last night. I felt the Herx coming on towards the end of the infusion and started getting some air hunger and anxiety, but because I got it so late in the day, we didn't finish until 11pm.
I went right to bed and awoke with the not only air hunger, but also pain in my chest and a low HR.
Keep in mind I have been told I have POTS and my HR hangs around 80-90's at rest. My morning HR was 57 and my BP was 96/69. Major brain fog too. Of course all of this brought on anxiety that unfortunately Xanax didn't help, so off to the ER I went.
I had read that if you experience shortness of breath after the infusion, it could be a pulmonary embolism.
Of course, there was none, but while in the ER, the monitor alarmed and I looked up and saw my HR at 48. Yet another scare.
The ER physician wasn't impressed with any of it despite all of the information I had given her without mentioning Lyme.
Now I'm home and things have calmed down a bit. I just can't believe the IVIG is causing this and only hope it's a sign that I am fighting off the disease. Temp is 99.1 and again I had been running 96.5-97.0 prior to the start of the IVIG.
I found a post from ZipZip titled IVIG update where he reported a major Herx from just a single 50gm infusion. I now have 100gm sitting in me with one more dose to go. I spoke with the nurse and we will try again on Monday to finish this up.
I sure hope the single 125gm dose I get next month will be easier.
What a terrible disease. This is different from most of the Herx's I have had and by far the scariest.
Will continue to update.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Sorry that it has been so rough for you. You may want to call your dr just to mention some of the symptoms you have experienced and also of course your trip to the ER. Sometimes the side effects of IVIG can be flu-like symptoms and even a temperature. But maybe your dr can help you figure out which are side effects vs. herx reactions.
If you are getting 25 gm per day for 5 days then I suspect you will only get 25 gm next month for that one day and you hopefully won't feel such effects.
I am on a 2 day every other week schedule and find it to be more tolerable vs. the 5 days in a row. So if for some reason your dr wants to give you more than one dose a month going forward you might want to ask him/her about spacing it out a bit during the month.
Keep us posted and good luck with dose #5 today.
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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lymeHerx001
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quote:Originally posted by lymetwister: Ok, took some photos of these things. The picture on the left shows three of the critters with my webcam. The picture on the right shows one of the red legs at 900x on my scope. It's the best I can do with my limited resources, but these are the things that are making me nauseated as can be.
oh my god what the hell is that?
Posts: 2905 | From New England | Registered: Sep 2004
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lymetwister
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Member # 19590
posted
IVIG Update:
Hey folks, sorry for no posting the last few days.
I feel like I'm in a big Herx. Major brain fog, anxiety, nausea, and some other stuff...
Monocytes are up and low grade temps. My temp is now around 98.5-99.3 which is way up for me.
I called the IVIG pharmacist and questioned what she thought was going on. She said if I had a big infection, than perhaps this is all normal. She thinks this is the immune response kicking in and now fighting the infection, which there is no way around the Herx.
I was also told the half life of this IVIG I received is 40 days, so this means it's in me for 80 days.... I just hope the Herx dies down.
Every sign points to "the fight is on", but I can't say for sure as I can't see inside my body.
I just hope I'm not going through all of this for nothing. Everything else I do to treat is on hold except for detox.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Pinelady
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posted
Lymetwister remember some of the bugs are inside cells.
Cell are damaged with treatment of dead and dying bugs.
Give the new ones lots to work with.
Food, suppliments, etc.
Glad your making progress.
Put up your dukes!
-------------------- 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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Marnie
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posted
Your OWN antibodies could work IF you restored your Mg levels.
Proof:
Characterization of the physiological requirements for the bactericidal effects of a monoclonal antibody to OspB of Borrelia burgdorferi by confocal microscopy.
The bactericidal effect of Fab-CB2 is not dependent on the induction of spirochetal proteases but
is dependent on the presence of Ca2+ and Mg2+.
Supplementation of Ca2(+)- and Mg2(+)-free medium with these cations
***restored the bactericidal effects of Fab-CB2.***
The mechanism by which a Fab fragment of an antibody destroys a bacterium directly may represent a novel form of antibody-organism interaction.
PMID: 9125579
A ``novel form of antibody-organism interaction?'' I don't THINK so!
E. Required by immunological process. Magnesium, immunity, and allergy: Mg is required for several steps of immunological reactions 1. Lymphoblastic transformation, a prerequisite of secretion of antibodies by lymphoblasts, requires Ca2+ and Mg2+ 2. Mg is required for synthesis of proteins, immunoglobulins included 3. Antibody-induced complement activation is Mg dependent 4. The antigen-immunoglobulin-complement reaction induces degranulation of the mastocyte
Bb does have lysine in its Osps...
Posts: 9426 | From Sunshine State | Registered: Mar 2001
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
You are right Marnie that would be faster than
fast. Endotrachial to deliver to endothelial. But
if cell are destroyed during treatment it may be an
issue. I don't know how much apoptis they can take.
Or rather after absorb. It will be interesting to
see if this could become treatment and O2
delivery may help also. Are they doing any animal
studies?
-------------------- 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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