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Omg...i Might Be On To Something


Rachel--24

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AndreaB Contributor
OMG!!! I am having my first IV abx infusion tomorrow!!!!! :D:) Insurance is covering the IV's! Yay!!!!!!!!!!!!!!!!! So at 2-3pm tomorrow I will be infusing! :)

Keep us posted as you can. I'll be among those waiting. :)


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mftnchn Explorer

Kassandra, that's excellent news. Sure hope it goes really well! Be sure to have your ecoffee ready for the herx! ;)

Sherry

CarlaB Enthusiast
Thanks everyone, sorry I vented!

That's what we're here for!

Today I found out my aunt is in ICU and not doing great at all. I was feeling so good til i found this out and now im in a major funk. It jsut proves stress does do so much damage to a toxic person lol.

:(

OMG!!! I am having my first IV abx infusion tomorrow!!!!! :D:) Insurance is covering the IV's! Yay!!!!!!!!!!!!!!!!! So at 2-3pm tomorrow I will be infusing! :)

YAY! As Sherry said, get the coffee ready!

NoGluGirl Contributor

Dear Everyone,

I have been reading my spirituality books, so that is what I have been up to. My eyes cannot take staring at the computer much, especially now that I have been reading so fast. I hope to at least skim the last twenty pages so I do not miss anything important. The books are due back at the library Monday. I have to hurry up and get them read! :blink:

An exciting new development has occurred. Dad met someone at work who was having severe digestive issues, particularly nausea. She is an engineer for PCDI. The PPIs she was on were impossible to get off of. Everytime she tried to stop taking the Prilosec, she would get horrible reflux even from water!

I have the same difficulty! :o These medications can prevent you from absorbing calcium, B Vitamins, and other essential nutrients. You also need the stomach acid to break down the food you eat.

I probably am not absorbing much, considering I have seen pieces of food in my stool. :unsure: That would explain feeling weak and sick all the time! Nausea was an unbearable symptom the engineer Dad spoke to had as well. She told him about a chiropractor in town who does nutrition, and was able to get her off of them! I checked out two of the supplements, and they have gluten. I hope he knows something else to use!

I got an appointment with him next Friday morning at 11:15 am. I am very excited. This doctor I actually have a good feeling about! Guess what? He also does meridians! The appointment will be 45 minutes! Meanwhile, my Lyme testing has yet to happen. Mom and Dad have had to use my Christmas and Birthday money to float until payday in recent weeks. :(

Dr. D has a symptom list he sends that is very thorough. It makes me think perhaps he is familiar with Lyme. I hope so, because then I might not have to go all the way out to Springfield, MO to get treatment. That is a six hour drive! If I ever get diagnosed, that is. Everything seems to get in the way for my testing! :angry:

Sorry I had to just jump on in, since I have missed so much! At least I have one thing going on that is good right now. These books are great! You all might find them interesting, too. They are about angels.

Sincerely,

Jin

mftnchn Explorer

Jin, so good to hear from you. I will look forward to your update after the appointment. I sure do hope he is aware of gluten free.

Sherry

confusedks Enthusiast
Kassandra, that's excellent news. Sure hope it goes really well! Be sure to have your ecoffee ready for the herx! ;)

Sherry

LOL! Uh oh... I will do an ecoffee tomorrow morning before she comes. If I can lay on the floor, my port is still pretty painful. ;) Is your post an indication of what I should expect from the herx? :rolleyes:

It's really going to happen though, because I got everything tonite from the infusion company. They dropped it all off, so the nurse will come tomorrow and it will all be here waiting for her! :)

And, other good news...I got an appt with Dr H on Sunday afternoon. His secretary called me to see if I could make it because Dr H wants to see me. :) I said yes of course. They've been really great. I have gotten calls from either Dr H or his nurse a couple times in the past week or so, just to check on me and see how I was doing. :wub:

AndreaB Contributor

Jin,

Good to hear from you! Let us know how the appointment goes when you are able. :)

Kassandra,

Yay on the appointment on Sunday. Let us know how the IV goes when you can.


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dlp252 Apprentice

YAY Kassandra!!!!!

Jin, glad you posted! I hope this new guy works out for you!

Nanjkay Apprentice
Okey dokey, well here it goes...

The abnormalities in the celiac disease 57 panel were:

"Abs. celiac disease 8-celiac disease 57+ Lymphs............44 LOW"

So I've been told that you want it to be around 200. Wow. 44.

and my other abnormalty was:

"MCH............34.5 HIGH"

Don't know what that means.

Okay, so I'll copy and paste the lyme symptom list from the lyme forum and just leave up my symptoms (and maybe I'll add a few):

Symptoms of Lyme Disease

ed

Headache, mild or severe (mild at most times)

Pressure in Head

Twitching of facial (mild eye twitching)

Stiff or painful neck (HORRIBLE. Can't breathe.)

Jaw pain or stiffness

Sore throat, clearing throat a lot, phlegm (okay see this is where it gets weird- I have white spots and severe itching in my nose and ears)

Double or blurry vision (mild)

Increased floating spots (mild)

Pain in eyes, or swelling around eyes (mild)

Oversensitivity to light (mild)

Flashing lights/Peripheral waves/phantom images in corner of eyes (mild)

Ears/Hearing (itching)

Pain in ears, oversensitivity to sounds (itching, sound sensitivity)

Constipation (SO BAD...and grey matter in stool? Anyone know anything about that?)

Irritable bladder

Upset stomach (nausea or pain)

Bone pain, joint pain or swelling, carpal tunnel syndrome (mild)

Stiffness of joints, back, neck, tennis elbow (NECK)

Muscle pain or cramps, (mild)

Shortness of breath, can't get full/satisfying breath, cough (SO BADDD!)

Chest pain or rib soreness (partly due to enlarged spleen but yes)

Night sweats or unexplained chills

Heart palpitations or extra beats (SO BAD)

Tremors or unexplained shaking (only when I exert myself)

Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis (SO BAD)

Pressure in the head

Poor balance, dizziness, difficulty walking (very much so!)

Increased motion sickness

Lightheadedness, wooziness

Too much sleep, or insomnia (insomnia in morning hours and can't sleep in day)

Panic attacks, anxiety

Memory loss (short or long term)

Confusion, difficulty in thinking

Difficulty with concentration or reading

Loss of sex drive

Unexplained menstral pain, irregularity (No period for three years!!!)

Testicular or pelvic pain

Unexplained weight gain, loss (MAJOR WEIGHT LOSS)

Extreme fatigue

Swollen glands/lymph nodes (in neck, swollen spleen)

Unexplained fevers (mild)

Symptoms seem to change, come and go

Pain migrates (moves) to different body parts

Early on, experienced a "flu-like" illness, after which you have not since felt well.

Low body temperature

Allergies/Chemical sensitivities (MAJOR FOOD ALLERGIES...can only eat like 6 different foods)

Actually that pretty much covers it....if someone could, take a look at what's in the parenthesis :)

Antibiotics:

Doxycyline

Biaxin

Nystatin

Supplements:

Liquid Minerals

B50

DHEA

Glutathione cream

B12

B6

TMG

Milk Thistle

Probiotics (two types)

Okay so my main concern right now- my digestive system. I haven't been able to take supplements at all in the past, the constipation gets soooo bad. How is my digestive system going to do this? I don't think I can detox if I'm not moving things along... (I know, TMI right...haha..)

Hope all is well with everyone.

Hello-

I really feel for you and all you are going through. I understand how you feel and I have almost all of the symptoms you listed and I can only eat about 6 foods myself. I don't have Lyme's actually, but I must have many other viruses floating around.

After much trial and error and being a guinea pig myself...my philosophy is firmly entrenched that I will only do things to BOOST and SOOTHE my system, and nothing to subtract- like anti-virals, toxin cleanses because they all weaken my system. So, no anti-biotics for me, no Nystatin (I had a terrible time on Nystatin... it's hard on the liver even though they claim it is not. I had trouble with glutathione cream as well, it weakened me. Keep remembering, it is all about the stomach. Concentrate on healing the stomach and then stay away from foods that may feed your virus like sugars and simple starches. When I stay away from chocolate, sugar and refined foods, my peripheral neuropathy gets much better.

I do great on the B12 shots. They really help with mood and fatigue. I fee ten times stronger on the days I give myself a shot. And the shots are so easy. My naturopath said I could up the shots to three times a week and I have.

In my opinion, stay away from anti-biotics at all costs. Stay away from gluten and eat as little sugar as you can. I tend to treat myself to gluten free pancakes because it is one of the only foods I can tolerate, but feel much better when my day is free of starches.

I tend to have tightness in my chest and palpitations when I eat yeast or starches.

Which leads to another recommendation...I keep a food/medicine/supplement journal. i list everything I put in my mouth (or on my body like the glutathione cream) every day. And then I list my symptoms. I only try one new thing at a time!! This is very important. For instance if I want to try a nightshade like a tomato to see if I can tolerate it, I don't try any new supplements or meds that day or the next so that if I am symptomatic I know what caused it.

And I just ordered Progurt, a probiotic yogurt making system you make at home from Australia. It puts a trillion little units of bacteria in the yogurt. I can't tolerate dairy, so I will try to make it with goat's milk and if I can't tolerate than I will put the bacteria in water.

And take a lot of digestive enzymes with your meals. The nausea suggests a lot of stomach acid and burning and inflammation so,

If you can, take some herbs to calm your stomach like DGL (licorice without the high blood pressure component), or slippery elm or marshmallow.

Just keep pumping those probiotics in there. Rotate different brands too.

Another thing I have tried with no adverse affects is Renelix - which helps cleanse the kidneys. If you are going to do any detox, you have to keep the kidney toned and strong.

I hope have helped you in some way. I feel for you and hope you do OK.

Nancy

CarlaB Enthusiast

Hi Nancy,

Welcome to the thread!

How do you know you don't have Lyme? It's a clinical diagnosis based on symptoms .... testing isn't that great, and most often the testing that regular docs use is even more inaccurate. Were you tested by IGeneX, a specialty lab? Even then you can have a false negative.

I understand your apprehension about abx because I was always that way myself. But it's dangerous to tell someone with a bacterial infection to avoid abx at all costs.

I healed my gut .... seriously .... it's rid of parasites, candida, bacterial overgrowth, etc. I can eat ANYTHING without it affecting me. I still eat healthy though.

I tried to switch over to natural methods to heal Lyme once I got my life back .... the herbs couldn't do the job for me and get rid of the rest of the infection. My lyme doc is a holistic MD and he says that if he could treat it with all herbs, he would.

I am actually on more herbs than meds, but I am back on a heavy abx regimen.

So, I understand your point. However, though abx need to be respected, some of us need them. My gut is healed and I'm still battling Lyme.

Sixteen months ago, I was completely disabled by Lyme ... stayed in bed all day, or might move to the couch. I could not leave the house without someone accompanying me or I might get disoriented and lost. I was in very bad shape. By the time I finally got diagnosed I had tried about every natural remedy out there. What you are suggesting is good, but it's not enough for someone who is very sick with Lyme.

Today I am much more functional. I still need WAY more rest than the average person and often don't do anything but lie around all morning till lunch, but for example, yesterday, I went to Lowe's with hubby, worked out a heavy workout of cardio and weights, went out to dinner and to a movie. Last year just going to Lowe's would have put me in bed for the rest of the day.

There are others on the thread who have Lyme as a secondary issue .... they do well with protocols like you suggest.

mavensophie Newbie

I think I have found something that is as close to "cure-it-all" as anything has ever come.

I mean, I have tried everything. I was just about ready to embark on Dr. Schulze's Incurables... $480 and 30 days of... I mean I would have to take off from work.

Then, at my chiropractor, he was advising someone on what type of digestive enzymes to take. He said that the new kinds that have Swedish Bitters in them, are really effective.

I hadn't heard of Swedish Bitters before, so I looked it up on the Internet. I ordered some... I would give anything to have a good day... I am 60 and I have never had a painless day in my life.

I took the bitters as prescribed, 3 tablespoonfuls a day, in half a cup of water, half before meal, half after meal.

The first day I was sure I was going to get worse... I had nausea, cramps, an overall bad feeling. I am not a quitter. I went on for the second day. No worse, no better than normal. Third day: yesterday. I went to the bathroom 6 times. The smell of what came out of me was atrocious.

Bad, rotten, the smell of rotting flesh. I woke up early today. I felt hungry. Healthy hungry, not my usual pangs. I went to the bathroom. Sweet smelling... wow. And no pain. Even when I palpate my belly.

I think I am not going to do the incurables program... Anyone had a similar experience?

Sophie

Green12 Enthusiast

Good news Kassandra!! That's awesome the insurance came through on the IV's :)

I hope the infusion went well today.

Hi Jin!! Glad you popped in, the appt with the chiropractor sounds promising. I hope he is able to help you with some of your digestive issues :)

mftnchn Explorer

Sophie that is very interesting. I looked at the herbs listed and it includes senna which is a laxative, I don't know about some of the other things.

confused Community Regular

I just wanted to pop in and say hello. Ive been an emotional basketcase today. I cried all morning about my aunt. Things are getting worse for her. I really want to go and see her but the drive to denver would be so hard on me.

My mom did come and spend day with us and we went to the festival and had an great time. we all got sunburned tho. My mom did tell me today that i looked really good today. That i was dressed cute, and looked the healthiest that i have looked in the last year. That really made me feel good. My mom is one that does not give those kind of compliments unless it is really true lol

Everyone,

Is there anything natural to do to get someone blood sugar lower. her kidneys are always failing and she has 4 major specialist looking after her. She is dying the same exact way my grandma did 4 years ago. I guess she even looks exactly like my grandma did.

I am so afraid that one day that will happen to my mom. My aunt is only one year younger then my mom.

paula

Rachel--24 Collaborator

Awww Paula I'm so sorry that you're having to go through this. {{{hugs}}}

I'm glad you had a nice day with your mom and yeah...its a really good feeling when people notice that you're looking healthier. It sounds like you've been feeling better and that will show on the outside too.

I can understand how you must feel and being worried about your mom as well. It must be really hard to see two people you love going through the same thing like this....I would probably have some of the same fears. :(

I think the best we can do is to try to keep our body as healthy as we can by learning about detox, improving our diets, trying to minimize our exposure to toxins and things like that. It can all make a difference.

About 4 years ago I had some tests done and they said I had a "fatty" liver. Its more common in those who are overweight and yet I was thin, only 32 and my liver was not in the best shape. The Dr.'s didnt give me any advice at all.

After I'd removed all the metals and been on a healthy diet with no processed foods a different GI was running different tests and did the same test to check my liver and it wasnt fatty anymore! My liver appeared to be in good shape.

So I think all of these things are important as far as keeping the body in good shape. I dont know how my liver was fatty but I did eat very poorly...lots of fast food and microwave dinners.

Nanjkay Apprentice
Hi Nancy,

Welcome to the thread!

How do you know you don't have Lyme? It's a clinical diagnosis based on symptoms .... testing isn't that great, and most often the testing that regular docs use is even more inaccurate. Were you tested by IGeneX, a specialty lab? Even then you can have a false negative.

I understand your apprehension about abx because I was always that way myself. But it's dangerous to tell someone with a bacterial infection to avoid abx at all costs.

I healed my gut .... seriously .... it's rid of parasites, candida, bacterial overgrowth, etc. I can eat ANYTHING without it affecting me. I still eat healthy though.

I tried to switch over to natural methods to heal Lyme once I got my life back .... the herbs couldn't do the job for me and get rid of the rest of the infection. My lyme doc is a holistic MD and he says that if he could treat it with all herbs, he would.

I am actually on more herbs than meds, but I am back on a heavy abx regimen.

So, I understand your point. However, though abx need to be respected, some of us need them. My gut is healed and I'm still battling Lyme.

Sixteen months ago, I was completely disabled by Lyme ... stayed in bed all day, or might move to the couch. I could not leave the house without someone accompanying me or I might get disoriented and lost. I was in very bad shape. By the time I finally got diagnosed I had tried about every natural remedy out there. What you are suggesting is good, but it's not enough for someone who is very sick with Lyme.

Today I am much more functional. I still need WAY more rest than the average person and often don't do anything but lie around all morning till lunch, but for example, yesterday, I went to Lowe's with hubby, worked out a heavy workout of cardio and weights, went out to dinner and to a movie. Last year just going to Lowe's would have put me in bed for the rest of the day.

There are others on the thread who have Lyme as a secondary issue .... they do well with protocols like you suggest.

Hi Carla-

Thanks for writing. I have been on this thread on and off over the past year but mainly as a grazer. Thanks for your input, but what I stated in my post is that it is merely MY OPINION. I don't ever want to offend anyone's sensibilities, I can only speak from my extensive experience. I think you are lucky to be doing so well; I know a lot of people who go through the Lyme protocol and their stomachs are worse than ever.

I have been tested by Igenex and it has been looked at over and over again. I have had health issues all of my life but I really took a turn for the worse two years ago, meaning I became bedridden, had severe vestibular neuritis, stopped working and thought I was going to die, literally, about three months after I took a round of Cipro when I got back from Italy with an infection. I have gone undiagnosed with Celiac for 40 years, as many have, but after I took that anti-biotic, I thought I was going to die and that is when I started connecting all the dots and diagnosed myself.

I am glad you are doing so well. I know how you feel about the exhaustion. I deal with that myself and spend many days int bed or a portion of many days. Perhaps in time I will retest at Igenex, but I think for me it is a culmination of all of my diseases that give me the symptoms I have.

Take care

Nancy

mftnchn Explorer

Nancy, you have had quite a journey. I see that you've not been gluten free that long yet. Do you think it is making a major difference?

I am suspicious that it is going to take the full two years to see if my gut will heal substantially on gluten free. I'll be testing later this month to see if there is any further sign of improvement in the malabsorption. I did go from severe to normal on the Enterolab malabsorption index over the first 10 months.

Sounds like your Igenex tests were negative?

Finding an approach that feels safe to you and practitioners whose opinion you trust is difficult--and many of us share that experience.

My experience with lyme treatment has been mixed; I do not regret antibiotic therapy because it has given me my life back without living with constant pain. (I used to take 4 aspirin at a time every 4 hours just to function and sleep). But I haven't been able to get beyond reliance on abx, and so far haven't found the answers to bring me into another level of healing. I'm still trying various things, and what I have learned on this thread has been substantial and helpful.

Sherry

nora-n Rookie

Question about the aunt and mother and grandmother, what is going on, is it diabetes 2 and kidney damage from that?

My mother had a weak diabetes 2 and it got much better after removing all sugar from the diet. But she still eats too much bread. But the doctor lets her since blood tests are better regarding blood sugar. I still think she should stop eating all that bread and starch. I had to just stop eating bread and potatoes (but I got all those critical remarks from hubby for munching which is a sin here, eating food without bread and potaoes to stretch it. I then the third time decided to not listen anympore)

After some months on low-carb and adding homeopathic Arnica diluted some more times (this is the newest fad in India regarding treatment for diabetes, it is supposed to work great for diabetes2) my weight finally dropped. Anyone with a wais more than 80 cm probably has some insulin resistance and I am sure I had.

I am doing fine now, doing a cleaning job and the arms hurt a little bit but the LDN takes care of that. It aslo helps with seasonal allergies, I was fine this spring, and also helps with low adrenals, I often had to use some hydrocortisone cream because my adrenals really hort and I was dizzy but the ldn helps, maybe because it reduces inflammation in the body. I am aslo under-dosed thyroid-wise but the ldn takes away the hypo symptoms, maybe because it lowers cytokines, maybe. My TSH has finally gone up towards normal, is about 0,8 now (was really low and I got all this hassle from doctors despite of low ft4 and ft3 and hypo symptoms). There is more about ldn on the internet and ahsta.com .

nora

confused Community Regular

Rachel,

Thanks for your kind words. What do you think would be the best way my mom can detox her liver and kidneys? My mom also had an fatty liver a couple of years ago. The last time she was tested they went back to normal. All she really did was drink lemon water and eat somewhat more healthy. A couple of months ago she also got dentures and the dentist said her mouth was so full on infection. She has actually been feeling the best she ever has since getting rid of her teeth. She is also does the detox foot pads now to and that is made an difference for her.

Nora,

What happens in my family is they get really bad uti's. Once they become so bad their diabetis kicks in either makes their blood sugar spike or get dangerously low. Once this all happens then their kidneys start to fail. They also become septic and cause other organs to start to fail. They now have her on oxygen cause she is having trouble breathing now. This kept happening to my grandma for years until the last time that it took her life. Everytime this happened to my grandma they would give her antibotics, by the last time it happened to her, antibotics no longer worked.

It just scares me that one day that can be my mom or even me.

paula

CarlaB Enthusiast

Nancy,

I completely understand that it's your opinion. :) The thing is, you and I have years of experience on our side and know we will make it through this because we've done it before. However, the teenagers and young adults here don't have that experience and many of them are scared.

So, when someone says "avoid abx at all costs", it makes them doubt the treatment they have chosen. It is normal in Lyme treatment for someone to feel worse before they feel better and it is typical for someone to have trouble with their gut on the abx.

In fact, it was another bacterial infection and an abx that treated another illness that triggered my symptoms to worsen again. In an undiagnosed person with Lyme, abx can make the bugs more active, which is what it did to me. I would have died without that abx though, so I don't regret taking it and activating the Lyme ....I was starting to have more random Lyme symptoms anyway and I don't think I would have gotten that other illness if Lyme hadn't wreaked havoc on my immune system.

Anyway, I have to keep this short because I didn't hear my alarm this morning :blink: , but I don't think I'll have time today till much later to post. We've all gone different routes with this ... it seems that we're all drawn to different methods .... my treatment would have really hurt Rachel, yet hers would have allowed my Lyme to really take over.

I'm glad you're getting better on your protocol and that it's working for you. Do you have your WB results? My doctor told me mine were negative because she did not know how to read the test and I was actually CDC positive. It just helps to know what you're battling.

Rachel--24 Collaborator
Rachel,

Thanks for your kind words. What do you think would be the best way my mom can detox her liver and kidneys? My mom also had an fatty liver a couple of years ago. The last time she was tested they went back to normal. All she really did was drink lemon water and eat somewhat more healthy. A couple of months ago she also got dentures and the dentist said her mouth was so full on infection. She has actually been feeling the best she ever has since getting rid of her teeth. She is also does the detox foot pads now to and that is made an difference for her.

Paula, I think that any of the detox methods we discuss here can be beneficial. I dont know if she has a mercury burden from amalgams or other sources....but mercury tends to accumulate in the kidneys more than any other organ. If she has that burden on her kidneys heavy metal detox would be very helpful.

I'm glad she's feeling better having her teeth removed.

I know someone who was very sick with Lyme, heavy metals and many other things. She is now completely recovered...in her late 70's and more active than any of us! She says this would have never been possible for her had she not had her teeth taken out. She has alot of experience with the things we discuss here and she says that the biggest toxins we're exposed to come from the teeth....not only mercury but toxins produced by bacteria found in root canals as well as cavitations.

The toxins (mercaptans and thiothers) are carcinogens and the most toxic substances for the body....possibly even worse than mercury. They are produced by bacteria which are left behind when we get a root canal or develop cavitations. The bacteria learn to live in an environment without oxygen and these are the toxins they produce. It can poison the body and never do the problems get linked to the teeth.

I dont know if your mom had root canals but I believe that having them removed would certainly allow her to feel better...and if they were toxic (and most are) without them she will live a longer fuller life I'm sure. :)

Since the most toxic substances we're exposed to come from our teeth.....taking care to avoid amalgams and root canals can increase our life expectancy...greatly.

"I don't feel comfortable using a substance designated by the Environmental Protection Agency to be a waste disposal hazard. I can't throw it in the trash, bury it in the ground, or put it in a landfill, but they say it is OK to put it in people's mouths. That doesn't make sense." - Richard. Fischer, D.D.S.

"If I was diagnosed with an incurable degenerative disease, I would definitely extract any questionable teeth. The infected tooth you leave in could be the one that is killing the patients." - Harold Ravin, D.D.S

So I think this is the single most important thing that your mom could have done to improve her health....but I would still encourange detox to help remove those toxins which still remain in the body. I think nowadays with so many toxic exposures detoxification is *key*.

I had one root canal put in after I got sick....and by the same dentist who exposed me to all of that mercury. I believe the root canal was making things worse for me. When I went to a biological dentist to have my last 2 fillings removed I talked to him about the root canal...and the fact that it was giving me problems. He recommended I have the tooth extracted in case it was a big factor in my health problems.

Even though the health problems were already there it was definately possible that the root canal was increasing the toxic load even more....which might make it impossible for me to recover. I extracted the tooth...I felt better afterward and I've never regretted it. :)

confusedks Enthusiast

So my first infusion went okay. The nurse came and showed us how to do everything. She showed my mom more than she showed me, but I caught on anyway since I've seen so many IV's started before. ;)

Basically, they have to "access" the port, which is done by putting a needle in it. She unfortunately didn't get "in" on the first try, so she had to do it again. It HURT!!!! I actually cried, which as we were talking about, is VERY rare for me. :( It hurt badly. The port site is very sore still from the surgery and she had to be really rough with the whole area so she could get in properly.

Once she was in, we started infusing. I started to get air hunger a few minutes in and I was a little worried that it was an allergic reaction, but it wasn't. The total infusion only took about 30 minutes. It's short! :)

It went well, but I'm glad it's over. If anyone is interested, I'll post pictures of the port. (It makes it easier to understand what I'm talking about, lol) There's also pictures of my PICC line, but ignore that! :)

Open Original Shared Link

Rachel--24 Collaborator
So, when someone says "avoid abx at all costs", it makes them doubt the treatment they have chosen. It is normal in Lyme treatment for someone to feel worse before they feel better and it is typical for someone to have trouble with their gut on the abx.

I do agree that these can be scary words for someone who is using this method and there are several here who are young , scared and in the very early stages of treatment.

I also think that abx certainly has its place in treating Lyme....however, some people may not yet be in a place where their body is ready to accept this method of treatment.

I think that has to be taken into consideration as well. Some people are not going to do well with an aggressive approach without first doing some things to prepare their body for that. Everyone is different and abx is not going to be right for everyone....at least not in the same stages of treatment.

Some people may get alot better by addressing other things first and then later comes the abx when their body will tolerate it better. At that point the abx can also be much more effective.

Its all very individual.....so I think its good to share different experiences. Personally, I would be terrified if I started abx and did horribly if I were under the impression that most people were getting better this way.

Since there is a significant amount of Lyme patients who need to take other approaches in regaining their health I think its important to share those experiences so that anyone who might not do so well will know that they are not alone and that there are other ways to get better.

Rachel--24 Collaborator

Kassandra...good news! :)

I'm glad it went well and that there was no allergic reaction! YAY!

Sorry it hurt accessing the port but hopefully by the next infusion you will have had more time to heal from the surgery. :)

I almost cried last week when I had my DMPS because they were missing my vein for some reason. I have really good veins all over and usually they have no problem. It sucked because the nurse was "digging" to try to hit the vein...until I made her stop. Another nurse came over and reinserted the needle but she couldnt hit the vein either and she was digging even more!

So yeah...not fun...I had them use my other arm and it went well. I might have been a little dehydrated because I hadnt drank much water that day.

On a side note....anyone remember that the vein by my wrist ended up getting swollen and scarred from one mineral IV earlier this year?? The nurse told me the vein was scarred and couldnt be used again....she said there was a strong possibility that it would stay hard and swollen...because it was scarred.

Anyway, its HEALING!! :D

Little by little it is becoming less noticeable. Eventually I may not even feel it at all. YAY! :)

CarlaB Enthusiast
I do agree that these can be scary words for someone who is using this method and there are several here who are young , scared and in the very early stages of treatment.

I also think that abx certainly has its place in treating Lyme....however, some people may not yet be in a place where their body is ready to accept this method of treatment.

I think that has to be taken into consideration as well.

Agreed .... this is what I was trying to say .... all treatments don't work for all people. I was heavily into "detox" since 1991, so that wasn't working for me and I was prepared for the abx.

Unfortunately, there is no cookie-cutter approach with Lyme or any chronic illness.

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