Omg...i Might Be On To Something

[Green12]

Bev, I'm glad your tests ruled out some of those other conditions. I also don't know what a rheumatologist is

Thanks rinne and mia mia for your concern

I had another angioedema reaction so I have been laying low as I get through it, I'm really tired and worn out from it. But I have tried to read all the posts to keep up with what is going on with everyone.

I have been researching any connection between angioedema and lyme, haven't found anything concrete yet, still looking......

Does anyone happen to know what auto-antibodies are??

Almost forgot, Susie Q, I took an experimental drug (at the time) for hypothyroid. It was straight T3, liothyronine (sp?). The theory was instead of taking T4 to break down into T3, just take T3. I didn't get any results from it though. I also had taken sinthroid before the T3, didn't get any results from that either.

[AndreaB]

Beverly,

Glad you got some things ruled out. I'm still highly suspicious of lyme for you. Can't believe he didn't use igenix.

[Rachel--24]

OK...so I told the Bioset lady that my Dr. made me feel like recovery will be extremely difficult and that he just seemed grave and serious about it all...making me feel a little hopeless.

She said "No...its not hopeless." She said I will get better...she said that all of the people she treats in my situation get better. They all get better and there is no reason why I wouldnt...I'm doing all the right things to start with. She said that yes. it is much more difficult when there are numerous pathogens and when there is mercury as well. We have to get around all this and its just more work but I will get better.

So I told her about how if the results are positive on the next test he wants to use antibiotics and I'm not sure about this. She said that thats a decision that I have to make on my own. She said that if she were in my shoes she wouldnt really go that route....she doesnt think its the best thing for me but its a decision I need to weigh out the pros and cons and decide on my own what I want.

At my first appt. she mentioned this Dr. Amy Derksen, who comes and works with her patients every 3 months. Shes from Washington I think. Amy Derksen works with Dr. Klinghardt....I believe they are partners?? Anyways she said that I could schedule an appt. with her when she comes in Dec. but I didnt do it because I was overwhelmed with everything.

I asked her about it today and she said its a good idea and she didnt think it was too late to schedule. She also said that she has other patients who have my same Dr. and also see Dr. Derksen as well. She said my Dr. and Dr. Derksen work together as a team for these other patients so I can think about that as well. I told her thats what I would like to do. Then I'd have the BioSET lady, my own Dr. and the Klinghardt/Derksen lady all working together. I think it sounds good.

The Derksen lady uses the Klinghardt protocol that Rinne has spoken about in the past.

Rinne, she said something about using a KMT device??? Do you know anything about this?? I have never read the Klinghardt protocol. Then she mentioned homeopathic stuff and herbs...all stuff used in the protocol.

She said they have some kind of test....maybe it is the KMT device?? I have no idea but she said that with some type of test they can determine of all the pathogens in my body....which are the strongest and which are the weakest. She said some pathogens may not be causing me any problems at all. They need to find out which ones ARE causing me problems and they can also determine which areas of my body the strong pathogens are affecting the most. Then they will focus treatment based on this knowledge.

So yeah...I have alot of bugs.

On her report this was what showed up

Lyme and co-infectants:

Borrelia turdi and 19 associated borrelia antigens, borrelia ansernia, borrelia texasensis, Borrelia Lonestari, Ehrlichia phag, Borrelia garinii, Erh. ewingii, Bab. divergens, Bab. microti, Borrelia Bisetti, black legged tick, lonestar tick sensitivity Q fever

I dunno what it all means but it seems like alot of bugs.

Also there were lots of candida, yeasts and molds

Lots of bacteria

On the plus side there were NO positives for parasites or viruses. woohoo!!

So tonight she worked on my sugar metabolism. She said once this is cleared I will digest sugars which I havent been able to do very well. She said this treatment is gonna give me better energy becauce when the sugars are metabolized they give energy....also the faster they are digested the more energy for me and the less food for the "beasties".

I asked her about the ice cream. She said I should continue eating it.

She said I NEED fats and since I cant digest any of the healthy fats and I'm reactive to them its important to get the fat from *something* because I need fatty acids and stuff. She said she does not want me losing any weight either. She said that yes, Lyme do feed off of sugar....as do all bacteria....but the ice cream is ok for now. Its not a ton of sugar and I need the fat.

She wants me trying 1/2 of a hard boiled egg this week....with an enzyme. She wants me taking an enzyme with the egg. I told her I'm more scared of the enzyme than the egg.

She laughed and said that I'm funny.

I wasnt kidding....I am afraid of the enzymes.

If I dont react to the egg at all after 2 days then next week she wants me to eat a whole egg!

Soooo scary.

This was what she wrote at the end of the report she sent to my Dr.

My current focus is to help her improve her metabolism of toxins by improving methylation, B vitamin/folic acid pathways, as well as sulfation pathways. The second phase of treatment will be to improve her body's metabolism of carbohydrates, fats and vitamins followed by food de-sensitization. The third phase will be to boost her immune response to pathogens. The fourth phase will be to de-sensitize to environmental factors weakening her immune system.

I told her that the Dr. said I cant recover from chemical sensitivities as long as I have Lyme. She said that I will recover from chemical sensitivities long before I will be rid of Lyme. She said that I will recover from chemical sensitivities FIRST...that this is much easier than getting rid of the Lyme. She said that Lyme has more to do with my food sensitivities than it has to do with the chemical sensitivities. The MCS is because of blocked pathways and inability to detox.

This is what her report says about heavy metals

Sensitivity to heavy metals below indicates a high correlation between the presence of heavy metals, an inability to excrete metals because of immune sensitivity interference and the symbiotic relationship with candida strains and other yeasts for heavy metals to bind in the body, increasing the difficulty in excreting those metals.

When the body tests positive to a heavy metal, from an immune perspective, during any chelation process, once heavy metals are mobilized, the immune system will react as if in an acute exposure and attempt to re-deposit the metals, interfering with excretion. The result is lower excretion levels and side efects from the delayed excretion of heavy metals and effects of re-deposition of metals in the body facilitated by the immune system. This can be avoided by making sure the body's rate of excretion does not exceed its rate of mobilization, to ensure that detox pathways are working optimally, and to ensure that the chelation product, whether it is an herb or chemical product is correctly dosed according to the body's rate of excretion.

Hows that for scientificness???

For anyone who smokes:

This is what she wrote on the report....

Rachel began smoking cigarettes at age 17 and continued to smoke as much as a pack per day for the next 14 years. I advised Rachel that cigarette smoke is a huge source of over 3500 chemicals and aspergillas and other pathogenic molds that will become deposited into the body and contribute to the overall toxic burden.

I quit smoking a few years ago but I guess she is saying the toxins have had an overall affect.

[Rachel--24]

Oh....forgot to add...I tried to schedule with Dr. Derksen for when she comes in Dec. I may have waited too long....I am on a waiting list but the girl said I will most likely get in but she wont know until late next week because she has to make calls and what not. She still has to put together the schedule so dont know for certain if there will be room left or not....its first come first serve. I pray that I'll get an appt. because it will be perfect timing for me. By december the results of my co-infection test will be back and I should have my pathways cleared and ready for treatment. If I dont get in I'll have to wait 3 more months.

Does anyone happen to know what auto-antibodies are??

I'm thinking its something auto-immune???

[Mtndog]

Wow Rachel...that was a lot!!!!!!!!!!!!!!!!! I'm sure it's a lot for you to process too, but I know you will recover. You have the strength of a 1,000 women in your little finger alone! Face it woman- you are a rocker!!!!!

Thanks for clarifying the gene/intolerance/celiac thing. I was only testetd for Celiac genes. I don't know if I had blunted villi because at the time of my endoscopy I had been gluten-free for two months and the moron only biopsied one spot. As my friend from Ireland says, "What an eejit" (idiot!).

My physiatrist didn't use Igenix because he didn't have access to them and he wanted to rule out some other stuff first. He told me that the Lyme test would probably come back negative but to follow up with the rheumatologist (they deal with joint problems/arthritis/fibromyalgia etc) and he could get me tested through whatever lab I choose. Ahh. more doctor's appointments.

Where's Richard when you need happy happy joy joy!?!?

[AndreaB]

Phew! My head is spinning.

Sounds like a very productive appointment.

So are you going to take the enzyme?

Sounds like a good idea to see this visiting Dr.

If I'm doing my calculating correctly, you were bit around 1 year before you quit smoking.....

Yea for the ice cream! Enjoy some for me......I do miss it.

Did I forget anything? Probably. I have a horse bid ending soon......must keep on top of that. I'll be back.

[Rachel--24]

I looked up Dr. Derksen. Shes an LLMD (Lyme Literate Medical Dr.)...she is Dr. Klinghardts assistant. I think I need to see her.

[Mtndog]

Holy Sh*%t! Check this out. I was just reading through my health history and look what I found:

June 28, 2003 went on hike in Acadia National Park. Hot and strenuous and got bitten badly by black flies. When I finished the hike I was pretty sure I had heat exhaustion. Bad headache, nausea, diarrhea. Got lots of rest and stayed out of sun. Symptoms lasted all week- extreme nausea, some diarrhea.

July 4, 2003 Still didn’t feel any better. Went to ER. They gave me fluids and ran some blood tests. Blood tests showed nothing abnormal so they thought it was either a stomach virus or reaction to bug bites.

Whoa!

[Rachel--24]

If I'm doing my calculating correctly, you were bit around 1 year before you quit smoking.....

I quit 2 years after I got bit. I quit right around when my symptoms came on. But then I wasnt so good because of the stress from my break-up....I started smoking again....ALOT. So during the first couple years of my sickness I smoked alot because of stress....then I realized smoking was making me have way worse symptoms and I havent smoked for a couple years now. I'm sure the toxins are still there though. I know I had high levels of cadmium on my hair analysis and also in the Bioset test. I *think* cadmium comes from cigarettes...I could be wrong though.

Holy Sh*%t! Check this out. I was just reading through my health history and look what I found:

June 28, 2003 went on hike in Acadia National Park. Hot and strenuous and got bitten badly by black flies. When I finished the hike I was pretty sure I had heat exhaustion. Bad headache, nausea, diarrhea. Got lots of rest and stayed out of sun. Symptoms lasted all week- extreme nausea, some diarrhea.

July 4, 2003 Still didn’t feel any better. Went to ER. They gave me fluids and ran some blood tests. Blood tests showed nothing abnormal so they thought it was either a stomach virus or reaction to bug bites.

Whoa!

Hmmmm...that sounds mighty fishy to me.

Did you get sick that same day that the flies attacked you?? With Lyme symptoms dont usually develop immediately. Usually anywhere form 3 days to a month later you might get some symptoms occurring. Another thought is that you could have had Lyme already and the flies gave you something that pushed you over the edge and caused the Lyme symptoms to begin?? Definately have the Igenix test to figure this out.

I didnt get sick until 2 years after I got infected with Lyme. This is what the lady wrote on my report:

In 2000 Rachel also recalls having some type of bug bite that had a circle around the bite or was very inflamed. However, she believes that she was fine for the next 2 years. I explained to her that sometimes it takes a subsequent trauma (chemical, accident, etc) to allow the Lyme pathogens to overcome one's immune defenses

.

[AndreaB]

Bev,

I agree with Rachel. Get the igenix testing!

[rinne]

Wow, I step away for like an hour.

Rachel, I think we are going to meet.

Actually I am thinking we all have to meet.

I am so glad that you can eat ice cream, of course it also makes me wonder if I can too. I like the sounds of this woman you are seeing and you sound upbeat after seeing her which is great. I'm going to go back and read your post again.

Hoffman has Klinghardt come to Calgary once a year to do a Family Constellations Workshop, I was thinking about going to the next one.

Beverly, if you are seeing a Rheumatologist I am wondering if you have ever taken steroids? If your Igenex tests come back positive it would be interesting to know what lab gave you a negative diagnosis.

On one of the links I posted back there somewhere one doctor said he believed Lyme to be indicated if half of all diseases we are seeing today. Another that the stats are more like 25 million people with Lyme in the U.S. And I think I even quoted from the Quackwatch site which, and I paraphrase, that those individuals simply suffering from fatigue or pain with Lyme will not be treated with antibiotics and I am assuming this but it seems obvious, they will not be told. The problem being Lyme doesn't stop with fatigue and pain it wants your mind too.

How many accidents on highways are being caused by Lyme brains that are fading in and out? I realized today that ever since I drove my bike into the tree I've been concerned about my driving.

[DingoGirl]

GOOOOOOOOD LOOOOOOOOOOOOORD

I've been reading for half and hour, catching up, am pretty caught up but think I must have dingo'd so much info....there was so much. And now, I am too tired to write and must go to bed and watch House....

Hugs and love to all of you, for all that you're going through.....Julie and Rachel, thanks for answering my questions. No, I don't take Armour, was just wondering if I should. dunno.

Oh, we did pick up one more dingo today..... A starved, skinny stray, kind of a combo chihuahua/coyote/dingo, I brought him home and he stayed for a bit but kept humping me and was feral and highly unsocialized.....and I had to remind myself that THREE is really too much. So, we had to take him to the pound. I begged them to place him....

off to bed. So much going on here...Rachel, I'm glad you took a couple of days off. Sheesh, I think you really need it.

Laura - the food sounds good.....I hope the results aren't too bad.

I forgot everything else.

night-night!

[Rachel--24]

GOOOOOOOOD LOOOOOOOOOOOOORD

I've been reading for half and hour, catching up, am pretty caught up but think I must have dingo'd so much info....there was so much. And now, I am too tired to write and must go to bed and watch House....

Ummm....yeah....I think I have dingo'd most of the events of my day. Wasn't I suppossed to be relaxing today??

Sheeeesh...I think too much scientificness for me today...I have to sleep it off now. Hopefully no fits of anxiety and just peaceful sleep.

[rinne]

Open Original Shared Link

The last day I was in Calgary was a six hour seminar Hoffman does on what he refers to as the Seven Levels of Healing. He told people right at the beginning that if they weren't prepared to change their eating habits and throw away their micro-waves that they were wasting their time with him. You can see that he has to spend a lot of time with just on the basics of diet and environment but that what he is much more interested in is the energetic realm of healing which is each person's very own radical responsibility. Klinghardt is into this too.

I have questions about all this based on my days in California, I saw a lot of people become intensity junkies going from one intense workshop to another without developing any real depth or making any substantive changes in their lives. I'm thinking on it.

I had another angioedema reaction so I have been laying low as I get through it, I'm really tired and worn out from it. But I have tried to read all the posts to keep up with what is going on with everyone.

I hope you are feeling better soon.

Holy Sh*%t! Check this out. I was just reading through my health history and look what I found:

June 28, 2003 went on hike in Acadia National Park. Hot and strenuous and got bitten badly by black flies. When I finished the hike I was pretty sure I had heat exhaustion. Bad headache, nausea, diarrhea. Got lots of rest and stayed out of sun. Symptoms lasted all week- extreme nausea, some diarrhea.

July 4, 2003 Still didn’t feel any better. Went to ER. They gave me fluids and ran some blood tests. Blood tests showed nothing abnormal so they thought it was either a stomach virus or reaction to bug bites.

Whoa!

The first couple of days could have been a reaction to the black flies, they can really make people ill if they are the same black flies I am thinking of, also flies and mosquitos can transmit Lyme, but I wouldn't think just the black fly bites would keep you sick for a week, you might have picked up a tick that day that you reacted to later in the week.

Before I forget, again.

My bugs: Babesia bigemina, Babesia microti, Nanobacteria, Trichuris trichiura, Borrelia burgdorferi

Night Night Susan.

[rinne]

Too tired, Rachel I read about the machine you asked about on his web site but I don't understand it although I wonder if it connected to the Rife Machine technology.

[AndreaB]

I had another angioedema reaction so I have been laying low as I get through it, I'm really tired and worn out from it. But I have tried to read all the posts to keep up with what is going on with everyone.

I have been researching any connection between angioedema and lyme, haven't found anything concrete yet, still looking......

I'm hoping you're feeling better Julie.

I wonder about a lot of things being connected. I wouldn't be surprised if angioedema and lyme are. I don't think much will surprise me anymore (but don't hold me to that ). Seems like a lot of things are interconnected.

[AndreaB]

So, we had to take him to the pound. I begged them to place him....

If it would have been cats it would have been different. I'm sorry for you and him but it needed to be done. I would be surprised if they didn't try to place him. I've seen lots of pets that need to be single pets, etc.

[CarlaB]

Ok...I was wondering about this for a long time. I've never seen anyone on this board or on the other board that has just one gene....even the people who get their entire families tested....they all have 2 genes but not everyone is sick.

If you say you've seen it....I will put it to rest.

Premature Post and no time to catch up right now!

Maybe we should start a thread on this ... it would be interesting to see what everyone says. I can't do it now, but if when I get home this afternoon no one else has, I will.

[dlp252]

Sounds like a great appointment Rachel...I can't wait to see this lady. Now, if I could just get a free day somewhere, lol. I think I saw that they have Saturday appointments...hum. Can I handle SIX days of appointments, lol?

Bev - wow, the black flies definitely sound suspect!

Julie - I've sure missed your regular posts...hope you feel better soon.

Wish I could remember the genes I have, lol. I'm pretty sure I have 1 celiac and 1 intolerance gene...but alas, the explanation is dingoed.

The HN doctor is having me take a supplement called Pectosol. It's pectin taken from citrus and it's supposed to bind with the mercury that is turned loose in the system by the amalgam removal. I didn't do a lot of research on it, but did find a couple of websites that mention it. Anyway, it was a special order and it came in yesterday, so I took some as soon as I got home from PT/chiro yesterday, and have taken some this morning. She wants me to take it for the 5 days or so surrounding each amalgam removal. I haven't been able to take much Vit. C because of the stupid stool test I'm trying to get through, which limits the Vit C to only 500mg per day. I still have 3 days to go on that, assuming everything comes out okay and on time, lol, but since I've started the elimination diet I've had a problem with C instead of my usual D.

[Mtndog]

Beverly, if you are seeing a Rheumatologist I am wondering if you have ever taken steroids? If your Igenex tests come back positive it would be interesting to know what lab gave you a negative diagnosis.

Hi Rinne- no, I've never taken steroids and God willing, from what I've heard about them, I never will. But I'm curious why you asked. That's interesting that the black fly bites can make you sick because I was really sick for a full week after that and still pretty sick about three weeks later.

The lab that tested me is Labcorp...they're just the routine lab that the hospital in my area uses for everything.

Julie- Hope you feel better soon.

Rachel-I hope you had a peaceful sleep and sweet dreams!

Andrea- This is TOTALLY off topic, but I just figured out (brain death is a painful thing) that you collect Breyer horses. did you ever ride? When I was little, I rode all the time and had a gazillion Breyer horse models. They are so coool!

Susie- Another dingo? Wow! You must be a dingo magnet! I'm glad you brought him to the pound and i hope he finds a safe, happy home where he will be spoiled rotten and loved madly.

Has anyone read this article When to suspect Lyme Disease by Dr. Bleiweiss:

Open Original Shared Link

and the story of Dr. Bleiweiss:

Open Original Shared Link

It's pretty interesting. I'd be curious to know what you LLBM (Lyme Literate Board members- no not Lyme Literate Bowel Movements ) think.

[rinne]

Beverly, I asked about the steroids because I was hoping you had never taken them and I know doctors do prescribe them for pain. I was guessing, at that point, that a rheumatologist would do that. Steroids, from what I've read, drive the Lyme deeper into the body and make it harder to clear. That is why a misdiagnosis of MS and treatment for it is so terrible for Lyme patients.

I'm off to check out the links you posted.

Am I a LLBM? TEEHEE.

[HawkFire]

can lyme's disease cause joint pain? I have struggled with joint pain for two years. No test shows why that is. My old lyme test was negative. Do you know if lyme can cause joint pain? I have ordered the ignex kit.

[CarlaB]

Rachel- About the gene thing, I was only tested for DQ2 and DQ8 and i only have DQ8 (I think...I have to check my signature ). But my doctor only tested me for the celiac genes. Actually, have we come come to a consensus that you can be gluten intolerant but not celiac? I thought that either way, it was celiac. I'm not sure I undertsand the difference between gluten intolerance (no damage?) and having celiac.

I'm still not going to have time to catch up right now ... I met someone on celiac.com who had two DQ1 gluten sensitive genes and had a positive biopsy, so there must be some damage possible even with no celiac genes. This one I am certain about .... I met her on a thread and verified what she said.

[dlp252]

can lyme's disease cause joint pain? I have struggled with joint pain for two years. No test shows why that is. My old lyme test was negative. Do you know if lyme can cause joint pain? I have ordered the ignex kit.

Yes I definitely think joint pain is one of the major symptoms if I'm not mistaken! I've had unexplained joint pain for a long time too. I've even had xrays and MRIs of my knees, but they didn't show anything, not even arthritis. A lot of that cleared up when I went gluten free and casein free, but I still have some--it's just not as bad as it was.

Rinne- what you said about steroids scared me, lol. I took them really regularly for the last 4 years up until this last year...everytime I had a sinus infection (which was about every 6 weeks), they gave me huge doses of antibiotics and prednisone!

[dlp252]

Has anyone read this article When to suspect Lyme Disease by Dr. Bleiweiss:

Open Original Shared Link

and the story of Dr. Bleiweiss:

Open Original Shared Link

It's pretty interesting. I'd be curious to know what you LLBM (Lyme Literate Board members- no not Lyme Literate Bowel Movements ) think.

Wow, just reading some of that article and THIS really struck a chord with me:

Patients most frequently report fatigue that varies from mild to debilitating. Usually there is a loss of interest and initiative so that lounging around becomes habitual. This derives not from laziness, but results from lassitude. Attempts to indulge avocational or vocational pursuits is frequently interdicted by either the languor of Lyme or by encephalopathy. There is a tendency to nap, sleep that is not rejuvenating, and hypersomnolence at inopportune moments; e.g., in the classroom or during a favorite pastime. Sleeping away entire days is not unknown. Paradoxically, at usual bedtimes, patients often experience insomnia or frequent awakenings. Sleep does not always provide respite as ferocious or vivid nightmares can occur. Childhood night terrors can be due to LD or more mundane causes

Describes me pretty well...expecially the frequent waking thing. In fact a lot of the articles sounds familiar to me.