MY HISTORY IS COMING TOGETHER??? Maybe it wasn't a sulfa allergy??? MAYBE IT WAS BART, LYME, ???

I know so many of you have been down this road, when pieces to the puzzle come faster and faster and you don't know whether to laugh or cry.

That is the day I had today. My head is spinning. So glad you are all out there - I really, really mean it.

My disclaimer is you will NOT hurt my feelings by picking through the following and telling me I am way off on one thing or another. I just have so much info in my foggy brain I feel like I will burst. So here I am! (sorry!)

I am starting to "flood" with memories of things I never even thought had anything to do with these decades of illness. I am really starting to think lyme, bartonella and _______? are very real possibilities. Of course I had a little idea, but wasn't feeling like this.....this certain I am really on to something now.

I will start with the one in my post title, then will throw anything/everything else out there.

1. Sometime around 2003-2004, I was prescribed Bactrim for an infection I can't even remember. Never thought twice and just took it. I got the prescription right before a 5 day trip (commuted alone on Amtrak). By the time I was on the return trip home, I was SO SICK AND WEAK I was terrified on the train. I was limp and thought I was dying. No cold/flu, just unbearable weakness and couldn't sit upright. When I got home my husband insisted on dragging me to the doctor. I was advised I likely had a "sulfa allergy" and later that night received a call from the doctor that my liver enzymes were "through the roof." I have never gone near sulfa again. But isn't sulfa used for BART? Couldn't this have been HERXING?

2. In high school (this would be post-tick bite) I developed roseola. Very odd for someone that age...usually babies/infants. I believe it is HHV-6 or HHV-7 and I just know I've seen reference to this and Lyme (herpes viruses)?

3. Somewhere around 2007 I believe, I developed Ramsay Hunt (shingles virus that attacks nerve in face) which isn't Bells Palsy but presents on the affected nerve side as such. I would have been around 39 years old - another very odd illness related to the herpes family. I have never been diagnosed with any of the more normal herpes, btw....just these oddballs.

4. I did read a lot today about bartonella rash vs stretch marks. The one clear answer I can't find is what is leading me to not throw it out yet. I was very skinny when I got pregnant - but I had a bad pregnancy....weak in bed the whole first trimester (no vomiting, just couldn't walk or stay upright). Preeclampsia at the end, labor induced, swelled up all over...I was absolutely huge. So you can imagine that I wasn't surprised I would have stretch mark battle scars for life...I really hurt my skin with the swelling, etc. THAT SAID, that was almost 22 years ago. about 3-4 deep gauges on both hips are still purple/red. Shouldn't 22 years lighten them? Others around them are the clear, silvery color....but these others are still like I just gave birth. Any opinions?

5. My 21 year old daughter - my main motivation for all of this research. I can't possibly state it all here (I put a lot in my introductory post last month, when new to the forum). But she has so many symptoms. Not even broad/vague - just crazy amounts of symptoms. The more I read and learn, the more I can't believe it. Again, will save her for another post - but just know that she was diagnosed with Celiac as an infant, as soon as she ate solid food. Autoimmune issues soon after birth (from me, is my best guess, transmitting the pathogen in utero). Lifetime of very odd illnesses, rashes, symptoms like me. We both currently have Hashimoto's with very high antibodies. We are almost like twins on the inside (wish I looked like her on the outside!! haha).

I know there are even more odd things that will pop into my head now. Like I opened the door and allowed them in. What a day.....thanks for being there.........Robin

What great information, Traveler......

It is such a rush when those pieces come together, isn't it?

I absolutely was so traumatized by the sulfa, will steer clear of it for life. It was so awful. Took months to get my liver enzymes back to normal.

Thanks for confirming about the herpes viruses. I have had some really weird ones, at weird ages of life, too. I know anyone can get these at any ages, but roseola is usually infants and Ramsay Hunt is older....I never fit the profile, but was definitively diagnosed with both.

I am so sorry for the pregnancies you lost - that is so heartbreaking. So happy you were able to persevere and be a mom...that this illness didn't steal that from you. I feel so much for those struggling with the illness and not able to conceive. I didn't want to ramble any more than I had already about my pregnancy, but like everything else in my history, it just seemed "odd." It didn't seem like the normal bad pregnancy symptoms, you know? I felt like I was just the copilot in my body for 40 weeks, and some sinister entity had taken it over.

As for my daughter joining......maybe someday.....we are 2000 miles apart and this is so overwhelming for her. I give her pieces of information because it is just so much to take in. Heck, I am still spiraling with all of this data overload! She is stronger than me, honest...I don't know how she does it. She is an aerial performer and just fights through her symptoms. She will perform and train people or go to her own lessons, then tell me how awful she feels (trapeze, lyra/hoop, silks, pole). She has a new love, a new puppy and is trying to walk the line of accepting this reality while trying to be a "normal" 21 year old. I am honest with her as to what lies ahead - but I am letting her digest this a little at a time. She, like me, wants to believe I found the root cause....that there is hope....but after a lifetime of feeling like your body is falling apart, it is hard to believe that we finally might be getting somewhere.

I have had the good fortune of seeing symptoms turn around with a parasite treatment, to know I was on the right track. She took ADP oregano (just 1 pill a day) for about 5 days and started having so much discomfort, she pulled back (I think she has a lot of pathogenic overload to contend with). I had told her different detox protocols but I don't think she believed it would be that big of a reaction.

So I think she may be here someday - but she isn't there yet. Until she is ready, I will carry us both...that's what mom's do, right? :)

Get some rest Traveler! I am on Pacific Time here....but I know you've been around here all day!

Sweet dreams.........Robin

Robin,

You will find as you read more posts that you seem to reading your own story. After awhile odd symptoms become the new "normal".

You don't realize that something is unusual until you mention it off hand and someone looks at you like you are out of your mind. An example of that is I hear my heartbeat in my ear when I lay my head down on my pillow. One day I mentioned it and my husband told me had never heard it.

Just start writing things down as you read them or as "new" symptoms come along.

1. Allergies, especially drug allergies are fairly common. Just remember when you start treating, especially if you use one of the herbal protocols to start slowly meaning even a few drops at a time.

I had a reaction to codeine while I was pregnant with my daughter (she's 23). They watched me for 2 hours and sent me home. Five minutes from home I started sweating and my vision blurred. I got into my house, closed the door and then lost control of my muscles. I grabbed the wall, slid down to the floor and lay there for a half hour. No doctor can explain those symptoms but they were definitely an allergic reaction. So just be aware as you try new things.

2. We have all kinds of things running around in our bodies. I used to get canker sores and fever blisters both caused by the herpes virus. It has been at least 6 years since I had either, until I started an herb that had antimicrobial properties and not only did it kick me on my butt, but I also got a fever blister.

The general theory is that Lyme takes over the immune system and doesn't let anything else out to play.

3. I never realized I had a version of Bell's palsy until I got on the forum and realized that overnight I get numbness in my face. Someone else mentioned it.

4. Don't have this issue but there are others on here. I know there are pics you can look at.

5. I just got my 16 yr old son's results back. He has two bands, both lyme specific, but by both CDC and Igenex he tests negative. But he certainly has symptoms. One of the worst being rages, but I just found out last week he has been having short term memory loss. He also has fatigue and anxiety. All of which have subsided since we started detoxing. Now we can treat him.

My 23 year old doesn't have any symptoms. Having said that as a baby/toddler she was on antibiotics for at least 3 years straight then another 4 or 5 years off and on because of chronic ear infections and chronic strep.

Hashimoto's seems to be more common on here than in the normal population.

If you haven't already, go to the "New to Lyme?" thread. There is lots of good info.

One additional suggestion that was made to me. If you have been infected for a long time, we stop making antibodies. The tests lok for antibodies. Some docs will put you on a short course of antibiotics (4 weeks) to challenge the lyme and force the body to create antibodies.

One of the forum members who I met an another social media site, suggested that I take an herb called Olive Leaf for at least 5 weeks before having the bloodwork done for the Igenex test drawn. I started at one cap (450mg) twice daily and it kicked my butt. I was exhausted, slept a lot and started a fever blister. I hadn't had a fever blister in at least 6 years.

When the second week came I couldn't increase the dose even though that had been suggested. It was too much and it took another couple of weeks before I could.

But I ended up with my test results indicating a positive result for both CDC and Igenex and for a current infection. I was exposed 35+ years ago. My son's results showed he had been exposed with 2 bands. I think it is worth a try.

Good luck. Keep posting questions.
Kim

KIM

What great information - thank you. "Great" doesn't do it justice, actually....but this morning, it is all I've got!

A few questions related to your reply, if you don't mind?

1. With your son, you mentioned you did detoxing and "now you can treat him." My daughter's response to only one Biotics Research ADP (oregano) made her scared. She already suffers from bouts of extreme panic/anxiety, with racing heart. For me, I did detoxing DURING treatment. I want to be so careful with her. So are you saying I should be doing a complete detoxing protocol before starting her on ADP? I only have to go on what has worked for me (which doesn't mean it will work for her) which was cleaning out parasites and detoxing at the same time. Then once that is done, rest my body for a bit, then begin Lyme treatment (likely will use Buhner). Please - any advice on how to gently ease my daughter into this would be appreciated. I believe she will herx even more than me...she has so many symptoms it is unreal.

2. I have heard about Olive Leaf prior to Igenex. But my thought was that I have been on this VERY powerful ADP protocol and I assumed it would have caused the same reaction as Olive Leaf? By the time I get tested (in a few weeks) I will have been on nearly 8 weeks of some treatment (was a rocky start with Paragone, then Oreganol, then finally ADP). 6 of those 8 weeks would be ADP. Does Olive Leaf do something different than this ADP would? Many posters on the forum (when I use the search tool) have discussed how powerful ADP is...that it "knocked them on their butts" and major herxes, etc. I have had a lot of neurological herxing since using it (weak, sore legs and twitches plus back pain like crazy) plus lots of parasite evidence. I really feel my body needs a little rest and building up before something new. But if I am decreasing the odds of getting a true Igenex result by not using Olive Leaf, please let me know.

Thanks again, Kim!
Robin

Robin,

I just reread my post and you are right I gave the impression that I was just detoxing for a while. Actually, what happened is that I have been trying to figure out how to treat me first. There have been several doctors but those doc visits never really went anywhere. I also had a lot of things going on that meant I couldn't really treat because of the possibility of herxing. That on top of everything going on would have been too much.

What I neglected to say is that I mad a desperate post on here asking if anyone had a treatment for the rages. I know that in the long run those symptoms should go away, but I needed a stop gap measure until I could get every thing under control.

My son is probably 7 inches taller than me and very strong. I'm ashamed to say there have been times when he scares me. I know he would never hurt me but it's like he is possessed. I finally figured out that I have rages too but not so often and many times we trigger each other.

So people answered my post with suggestions. One was Jernigan's Anti-tox CNS/PNS, so I ordered some and we tried it out. It made a remarkable difference. His anxiety, depression and rages disappeared. I know for sure its the cons/pns because we went on vacation and forgot it. It was melt down city.

Having said all that, some people do find it helpful to detox first. If you read Traveler's story you'll see she tried antibiotics, failed and then decided to detox before switching to herbals. I would think that it depends on your symptoms and how much your body can handle the die-off.

As far as the information I gave you most of it is from gleaning information out of the posts here on the forum. I just reorganized it to fit your post.

Hope you have a good day,
Kim

Kim - thank you.....

Will do some research on the Jernigans cns/pns. My daughter has issues with anxiety/panic attacks that just knock her off of her feet - so beginning any protocol is so scary. Maybe this is just what we need before doing anything. And will check into Travelers story again! Thanks for the tips!

Courtney - glad I could make you laugh! We all need it sometimes :)

Just regarding the Bactrim and sulphur allergy- I started it, thought I had had an allergic reaction to it, then considered afterwards maybe it was a herx (I didn't know I had lyme at the time I took it) but have only recently discovered I have a genetic mutation (CBS) that means I upregulate too much sulphur, hence I now am thinking that it was not an allergic reaction, nor a herx per se, but too much sulphur....

Just something else to chuck in to the mix??

Hey, just as well we all love a puzzle, lol, but it is better when all the pieces finally seem to fit!!