Omg...i Might Be On To Something

[confusedks]

Julie,

The bloating is all fine and good until I eat "real" food.

Carla,

Thanks...I will look into that. I am thinking we will talk to Dr. H once we get a treatment plain going...until then I will start on what they want me to start on.

Kassandra

[AndreaB]

And since I'm the only one who can fit up into the crawlspace, guess who's going to have to check out the damage?

I definately wouldn't want to do that!

Mold could also be wrecking havoc with you two. Let us know about your appointment when you get it scheduled.

[confusedks]

Did/does anyone ever have trouble swallowing?? Omg, this is awful, I am having really shallow breathing and I can barely swallow. I had a bowl of chicken noodle soup and I'm so nauseous I can't take it!!! :(

Kassandra

[AndreaB]

Oh Kassandra! I'm so sorry. I don't know what to tell you. I know that deep breathing can be difficult with lyme but since I don't have it I can't advise you of anything.

[mftnchn]

Kassandra, I read that is a symptom of one of the bugs of lyme, babesia I think???

[mftnchn]

I notice that the Bowen Labs test is no longer available. I wonder if I should have other testing done, especially for the co-infections. I wonder if any lab tests for which strain of borrelia you have?

I wonder what tests I should ask for, I have had positives from Bowen on borrelia, babesia, erlichia. Maybe a CD57, and another co-infection test? Would it be useful to do Igenex?

[confusedks]

UGH!!! I am SO SICK AND TIRED OF THIS!!!!!

This is really tiring...I have been getting worse and worse!!!

Seems like my body only likes liquids! I guess at this point, I don't know if I should call the LLMD and ask what to do about this. I have already lost about 5 lbs in about a week...this is worrying me!

I don't mind losing the weight, but I don't think it's healthy considering I probably am lucky if I got 1000 calories today.

Kassandra

[AndreaB]

I wonder what tests I should ask for, I have had positives from Bowen on borrelia, babesia, erlichia. Maybe a celiac disease-57, and another co-infection test? Would it be useful to do Igenex?

If you want to see what the bands look like you could. How long ago did you do the celiac disease-57 test?

[AndreaB]

This is really tiring...I have been getting worse and worse!!!

Seems like my body only likes liquids! I guess at this point, I don't know if I should call the LLMD and ask what to do about this. I have already lost about 5 lbs in about a week...this is worrying me!

I don't mind losing the weight, but I don't think it's healthy considering I probably am lucky if I got 1000 calories today.

That's why Carla and Rachel were on the dairy so heavy. To try and keep weight up. What about adding coconut milk to your smoothie, liquid fair. That might be enough to give you a caloric boost.

Have you started any meds yet?

Hang in there! It will get worse before it gets better, but it will get better. Just look at the progress Carla and Laura have made this year. They were just diagnosed with lyme in the last year. Donna has made progress with the supplemental support and herbal protocol she's been on.....speaking of which she had her appointment today.

[mftnchn]

Kassandra, the weight loss is disconcerting, but okay if you aren't too thin already. I think the coconut is a good idea. Can you add nuts to your smoothie or make your own nut milk?

Would you handle a custard, made with eggs and coconut milk or a milk substitute you tolerate?

What about jello? Making your own with gelatin? The gelatin has protein.

What about making soup then pureeing it in the blender into a cream soup? That way you can get a little meat in perhaps. Coconut milk might be good in that too.

I don't know, I don't tolerate coconut well, I'm just brainstorming here.

Also, I'd try the soup in very small amounts like every half hour and see if that is better. Maybe your system can't handle too much volume at a time.

Do you take digestive enzymes? I take a prescription one and it really helps, especially a higher dose. My allergist also suggested trying Bentaine-HCL, take one with the first bite of the meal. He said it can make a huge difference for some people.

[Rachel--24]

Quick drive by....going into work early today.

Just wanted to say that I met a Rachelvillian yesterday!!

Yup...I met Donna "in person" at Dr. S.'s office.

That was pretty exciting...finally meeting someone from this thread.

I wasnt expecting to see here there but I *did* think the girl in the waiting room looked alot like our "Smiley Spice"....except with lighter hair maybe? So yeah....I got to talk to her for awhile before they called her back to see Dr. S.

I finally met Donna!! It was bound to happen sooner or later...and I'm sure we'll run into each other again.

Be back later...gotta run off to work now....

[mftnchn]

Cool! Good for you, Rachel and Donna!

[mftnchn]

Well, quick update. I finally seem to be through my flare/herx or whatever, today was the first day I felt more myself since the 7th. There still mild achiness in my back, but otherwise I feel okay. Hope that now I'll be fine for awhile!

At least I do fairly okay with eating stuff, not like a lot of you.

My doctor said I can take zith. daily, but I am going to try to hold it at five days a week and then take Nutricidal the other two days.

[miamia]

Hey all-

I have not really posted in a while, Theres so much going on with everyone treatments, updates, etc. I ahve been trying my best to keep caught up on everyone.

Rachel-

I have to agree with laura allenia - not my friend!!! I went on 3 diffferent worm/ parasite meds. and I think that was one that made me feel worst.

I have been taking humaworm I haven't noticed much I think it has started causing some bad bloating the past few days but it it hard to tell because i often experience bad bloating. I am gonna try to just stick it out though its been like 2 weeks so far.

Yesturday I had chelation and I did a provoked test so I will get to see whats going on with the metals. My doctor and i have decided its time to address the lyme issues. He wants me to try levaquin on half the nornal dose. I am alittle hesitant though. HEaring how much it helped Carla is a little inspiring though.

Carla- how long did it take you to feel something from it? How long did you take it?

I can't believe Rachel and Donna met- I am jealous!!!

Julie- I owe you a Pm I am going to try to write you later today.

Kassandra-

it sounds like even though you are having a rough time right now you are also taking alot of positive steps. I am happy for you.

There is so much more to say but i am feeling pretty beat up so I willl try to write more later I just wanted to check in.

Miamia

[Ridgewalker]

Quickie, trying to catch up--

Kassandra,

Have you started the Zithromax yet? If so, could the shallow breathing and trouble swallowing be an allergic reaction?

[jerseyangel]

Yup...I met Donna "in person" at Dr. S.'s office.

This made me smile

[Nyxie63]

That's a good idea Nyxie.

I pay out of pocket I don't have insurance but even if I did most of it probably wouldn't be covered. BUT, some of the clinics and practitioners have been really good about working with me, offering a break and/or payment plans.

Nice to know about the practitioners being understanding. Turns out the llmd I'm calling today takes insurance, so that should definitely help take care of some of the financial owies. I'm sure ins won't pay for a lot of the testing or long-term meds or treatments or supplements. But at least the office visits should be covered.

Gotta celebrate the small victories!

I definately wouldn't want to do that!

Mold could also be wrecking havoc with you two. Let us know about your appointment when you get it scheduled.

Will do! Can't get into lymenet this morning, but I remember the dr's name (sort of - at least I remember the name of his practice) and will be checking the yellow pages for the #.

I'm soooo not looking forward to going up into the crawlspace. I think we have an industrial respirator around here somewhere. Will have to find it. Wondering if a sprayer with some good strong bleach solution will help.

The mold could also explain the problems one of our cats is having. He's had chronic nasal and eye problems for a while now (he's our snotty ol' foo-bear). The vet can't find the reason for this. Since it seems to get worse when the house is closed up, the mold could definitely be the culprit here.

[dlp252]

Good morning all! Yes...exciting news in the Rachelville meet up area, lol. It was really fun talking to Rachel yesterday...I was talking a mile a minute as I usually do when I'm excited. Normally I don't say much.

Sorry I didn't post my update sooner, but I got done with Dr. S at 3:40, then had to drive to the pharmacy (prescription WASN'T ready though), then swung by my house for a couple of minutes, then off to my annual Christmas dinner with my two good friends, then after that we went to visit our elderly friend who is recovering from a fall where she stress fractured her back...soooo, not much time at home yesterday.

Not a WHOLE LOT to talk about regarding my appointment. Dr. S does NOT want to do much until I get the MOLD taken care of. I did ask about chelation...nope, he doesn't want to do it until the mold issue is better, and he said he definitely wouldn't start it with me at this time of year because mold is at it's peak about now. He DID say that in February we can maybe do a provoked urine challenge to see how I move metals, so that was exciting.

I asked what his thoughts were on treating SOMETHING, lol. He said everything we've been doing is "treating" something, lol. So there you have it.

He said that I could stop any supplements that I thought weren't helping...I told him it's tough to know which ones are helping...I know which ones make me react, but not sure which ones are helping the most. I did discuss the magnesium with him...he wasn't pleased that I seem to be reacting to it all of a sudden. I told him that I have another kind (a liquid) that I can try, so in a couple of days I'll try that to see if I can tolerate it.

B-12. He suggested B-12 shots instead of the sublingual I'm taking. I got my first one yesterday in the office. I had already taken two sublingual tablets and asked if that was okay with the shot...the nurse just said, sure, but you may be up at midnight wrapping holiday gifts. Greeeaaaattt!!! Just what an insomniac needs, lol. Anyway, if I do okay with this one shot, the plan is to do them myself at home. I'm happy about that in a way...one less pill to take daily.

I asked about cholestyramine. Nope, he doesn't want me to take it. He would rather I fix the source of the problem...which is the mold...especially the carpet.

In the end he asked which symptom I wanted help with the most, and so thinking for a minute, I said the sleep issue. I've always felt that if I could just get a good night sleep, I'd feel better all around. So he gave me a prescription for Ambien CR. I kind of wish I'd just gotten the regular Ambien now though, lol, but we'll see. I plan to take one tonight and maybe one tomorrow night. My friend was a bit worried because she said Ambien CR causes people to sleep walk. I just said "well, at least I won't be sleep walking outside, lol, I need a key to get out of my house." So tonight when I go to bed I plan to "hide" the key so it's not in its usual place, lol...just in case.

I completely forgot to talk with him about the Humaworm, and there were a couple of other things I forgot to ask too. He asked if I was taking cat's claw and I said no, but only because no one has suggested it yet...not sure why he asked and he never said he wanted me to take it.

Donna, I would find at times magnesium would cause my stomach to burn. I am not currently taking it but I had to make sure I always had it with meals to avoid that burning.

Well, I take it pretty close to eating. I take it right after dinner usually.

Nyxie,

You're welcome. The supplements are the worst for me. My doctor's visits and the BioSET treatments are covered by my insurance at 70% for out of network, so I only have to pay 30%. The supplements aren't reimbursed so, yeah, I have to charge most of that. So far my lab work has been mostly covered...some of it 100%, some of it at the 70%, and a couple of things not at all. The insurance companies definitely dictate what most doctors can do and that's why many of the doctors we see here don't contract with them. My credit cards are pretty maxed out, lol.

Mold!! See my report on my doctor's appointment yesterday, lol. It's my doctor's opinion that people who are exposed to mold (as I am) will not get better.

Sherry,

You're welcome! At the very least, the alternative stuff definitely helped identify what things I have problems with.

Glad to hear you might be done with that flare/herx!!!

And, re the Igenix...I tend to think it might be worth it...at least you'd see where you are...course it wouldn't be an apples to apples comparison, but you would get an idea of where you are.

Rachelville was right.

That seems to happen a lot around here.

It's nice to have one doctor who can deal with all of this, but IMHO it has to be the right one, lol.

Kassandra,

OMG...this was the other thing I forgot to mention to my LLMD yesterday. In the past few weeks, I've had a lot of trouble swallowing. It's mostly with pills though. First off, they are hard to swallow, but then I get them swallowed, and drink lots of water, but in a couple of minutes, I can "feel" the pill in my throat--like it's stuck. I don't think it is, but that's what it feels like.

Mia,

Good to hear from you. In a way I'm glad to hear that you haven't noticed much with the Humaworm...it's probably working just fine, but I was so afraid you'd have a major reaction to it, lol.

This made me smile

Me too!

[aprilh]

Kassandra,

Just a few thoughts on food.....The coconut milk sounds like a good idea. My son is underweight and here are some of the ways I would boost his calories -

I use almond milk or some kind of nut milk. I add a protein powder called Ultra Care for kids - its very hypoallergenic. I also add some whey protein. My ND also suggested putting some coconut oil or olive oil on his food or in his smoothies. And I give him fish oil too.

There is a recipe called LSA and its 3 parts almonds, 2 parts sunflower seeds, and 1 part flax seed. Grind them up in a coffee grinder or food processor or blender until fine. You can add these to your smoothies for lots of good nutrition and good fats. This with the coconut milk is good for the liver as well.

My kids are picky so I have started introducing pureed foods into their diets. Sometimes I mix puree's into recipes just for an added boost. Such as pureed carrots when making hamburger patties. I have a book with many recipes. That wouldn't work for you since you are trying to eat ALL pureed.

Sometimes I make soup for them and they do not like any veggies showing in there.

I will sautee a little onion, garlic - add sliced carrots and peeled and sliced sweet potatoes (whatever veggies you like). Once everything is cooked a little, I will add vegetable broth and cook until the veggies are tender. When they are done I take a hand blender and make everything into a smooth soup. I will add a few gluten free noodles and cook them - the kids like the noodles, but you wouldn't even need to do that.

Another suggestion is to drink squeeze fresh lemon into water and drink this before your meal. Lemon helps get the digestive juices flowing. Apple cider vinegar helps too, but some don't tolerate it. Just don't drink a lot of fluids during or after the meal. Unless you just sip on the lemon water. You don't want to water down the digestive juices.

My hubby has cured his indigestion with apple cider vinegar. He was always eating tums and I told him to instead take a shot of ACV. It has totally cured him.

About 1 1/2 years ago I used to get "breathing issues" upon eating certain foods and I would bloat up and look like I was 6 months pregnant! I finally realized that this was due to having a severe systemic candida yeast issue. Now, I could have lyme, I have not been tested, but I did respond to a anti-candida diet and the breathing issues have gone away. I got the throat swelling thing as well. I kept thinking I was having allergic reactions to things.

Anyway, hope some of this helps!

Did your LLMD discuss possible heavy metal's?

Hope you get better soon!

April

[CarlaB]

Did/does anyone ever have trouble swallowing?? Omg, this is awful, I am having really shallow breathing and I can barely swallow. I had a bowl of chicken noodle soup and I'm so nauseous I can't take it!!! :(

Kassandra

Kassandra, it could be a babs herx. Zith is used in babs treatment. The shallow breathing sounds like babs. Is it like you can't get a satisfying breath? I used to get so bad I would even hyperventilate.

Watch for allergic reaction symptoms, too. Unfortunately, they look a lot like a herx.

Seems like my body only likes liquids! I guess at this point, I don't know if I should call the LLMD and ask what to do about this. I have already lost about 5 lbs in about a week...this is worrying me!

I don't mind losing the weight, but I don't think it's healthy considering I probably am lucky if I got 1000 calories today.

Kassandra

I found this to be very difficult, too.

I was eating smoothies made with 3 scoops of whey protein powder instead of two and lots of frozen fruit, enough that it was like a frozen treat. I ate lots of fudge.

Eggs were also okay for me, and so were Van's gluten-free waffles.

You were complaining before about gaining weight ... five pounds in a week sounds like it was most likely bloating that you were getting rid of.

I'd try to get more calories, even if it's only smoothies. As Andrea mentioned, I always drink a latte with whole organic milk every day. That's 240 calories and 14 grams of fat. Can you tolerate dairy? If so, even yogurt would be good.

I feel like if my body only wants liquids or soft foods, then that's the best thing to give it. If I gave it anything, it came out pretty much undigested.

This was different from food intolerances, like what I had with gluten. This was just that my stomach didn't seem to want the food at all. I'm big on listening to your body if what it wants is reasonable.

Just wanted to say that I met a Rachelvillian yesterday!!

Yup...I met Donna "in person" at Dr. S.'s office.

That was pretty exciting...finally meeting someone from this thread.

I wasnt expecting to see here there but I *did* think the girl in the waiting room looked alot like our "Smiley Spice"....except with lighter hair maybe?

So, did you recognize each other right away?

How fun is that!?

Carla- how long did it take you to feel something from it? How long did you take it?

Not sure if you mean Humaworm or Levaquin, so I'll answer both.

For Humaworm, it was about a week into it that I saw my worm. That lasted for at least a week. I took it for the full 30 days ... and I plan on taking it again after 90 days ... that's as close together as they want you to take it. I figure I probably need a second treatment of it.

For the Levaquin, I felt worse than I had been feeling for six weeks, then I started seeing improvement.

Levaquin does not treat Lyme, but it does treat bartonella. Does your LLMD suspect bart?

So he gave me a prescription for Ambien CR. I kind of wish I'd just gotten the regular Ambien now though, lol, but we'll see. I plan to take one tonight and maybe one tomorrow night. My friend was a bit worried because she said Ambien CR causes people to sleep walk. I just said "well, at least I won't be sleep walking outside, lol, I need a key to get out of my house." So tonight when I go to bed I plan to "hide" the key so it's not in its usual place, lol...just in case.

I'm glad your appt. went well! When I read that you could sleep-eat on the Ambien, I was thinking that was a good way to get more calories!! LOL

I use both types of Ambien .... I take half a regular one when I go to bed. If I wake up at 2;30 or earlier, I take a CR ... if I wake up later than that, I take the other half of the Ambien. That way I get a full night's sleep.

As for an update on me .... I started Rifampin and ended Levaquin a few days ago. As usual, I'm feeling a little worse from the new med. I almost refilled my Levaquin and started the Rifampin after Christmas, but because of the potential side effects of long term Levaquin use, I decided I should follow my PA's orders and start the Rifampin.

Well, I am feeling bad from it, but each new drug I start I feel "less bad" than the previous new drug I started. So, I don't feel as bad as I did when I started the Levaquin, but I feel bad enough that I left the gym after 10 minutes. At least it's killing bugs the Levaquin wasn't, right?

So, I'm going to have my ecoffee and then take an epsom salt bath instead of a sauna ... probably don't need to stir up any more toxins in the sauna.

[AndreaB]

Yup...I met Donna "in person" at Dr. S.'s office.

That was pretty exciting...finally meeting someone from this thread.

That is exciting! Figured you two would meet up some time having alot of the same doctors.

Well, quick update. I finally seem to be through my flare/herx or whatever, today was the first day I felt more myself since the 7th. There still mild achiness in my back, but otherwise I feel okay. Hope that now I'll be fine for awhile!

I'm happy to hear that your flare/herx is over. Let us know how the med schedule works. Do you think the massage thing you did was just too much?

There is so much more to say but i am feeling pretty beat up so I willl try to write more later I just wanted to check in.

I'm glad you were able to check in Mia.

Sounds like the humaworm has done pretty well with you.

Didn't you redo Igenex? Have you got the results yet?

I'll be curious as to how your metals challenge turns out too.

Gotta celebrate the small victories!

The mold could also explain the problems one of our cats is having. He's had chronic nasal and eye problems for a while now (he's our snotty ol' foo-bear). The vet can't find the reason for this. Since it seems to get worse when the house is closed up, the mold could definitely be the culprit here.

Yes you do need to celebrate all the victories.

Poor kitty. That very well could be the problem for him.

Dr. S does NOT want to do much until I get the MOLD taken care of. I did ask about chelation...nope, he doesn't want to do it until the mold issue is better, and he said he definitely wouldn't start it with me at this time of year because mold is at it's peak about now. He DID say that in February we can maybe do a provoked urine challenge to see how I move metals, so that was exciting.

I'm not too surprised he doesn't want to do anything til the mold is taken care of. That will be nice if you can do the challenge in February.

It's a bummer only being able to treat things via supplements when you want to go about things faster. We are in the same boat.

Well, I am feeling bad from it, but each new drug I start I feel "less bad" than the previous new drug I started. So, I don't feel as bad as I did when I started the Levaquin, but I feel bad enough that I left the gym after 10 minutes. At least it's killing bugs the Levaquin wasn't, right?

That's the way to look at it, you're killing more bugs. I do hope it lets up for Christmas. I don't know how long your "not doing well after new meds" lasts.

[confusedks]

Thank you to everyone who replied to me and gave food ideas. Unfortunately I think any heavy foods such as coconut would bother me! Truly the ONLY thing I seem okay with is smoothies...the good news is that I put LOTS of protein powder in the smoothies in the morning.

I can't do any dairy because I will get horrible migraines. I will try some things people have suggested and see how I seem to do with them.

And in answer to everyone's question, I am NOT taking anything the Dr. wants me to take yet, he wants me to do the stool and saliva tests first. I think I am going to do those today...my mom wanted to call and find out prices so she can know how much to expect to have to pay.

I actually slept a much needed 12 hours last night and I do feel a little bit better. I have my last iron IV today (well maybe). We are going to talk to the Dr. and see if he can run some blood work because if I am still deficient, we want to get the IV's over with before the Holidays so maybe I will start to feel a little better.

Kassandra

[Green12]

Sherry, thanks for weighing in on the laxative/fiber. Good news you made it through your herx.

Mia, so happy you checked in. You hang in there with all this and keep us posted on your urine challenge and the Humaworm!

Kass, are you better today? I am thinking you should call the Dr and let him know what is going on with your throat and breathing. That is scary, keep your epi pen close.

Figuring out the food thing is complex. If you could find a few safe foods that don't cause you any symptoms and rely on those for the time being until you can add a few more things in, this is what works for me anyway.

If you can handle liquids, even simply chicken and beef broths might work to give you some protein and some more calories.

Nyxie, I forgot to mention I LOVE YOUR AVATAR!!!!! I can't brain today, I have the dumb. THat's my new favorite phrase

Donna, sounds like you had a good appt. It's good to know you are treating something Hope the ambien helps.

How exciting you and Rachel met up!!

Carla, sorry you aren't feeling well today, I hope the bath helps.

[CarlaB]

I don't know how long your "not doing well after new meds" lasts.

Usually at least one herx cycle .... for the Levaquin it was six weeks .... when I was on Amoxy, it was even longer because it happened every time I increased the dosage. So, I'm expecting six weeks of feeling sluggish.

I don't feel that bad, just fatigued and a little sore. Adam could tell I didn't feel good because I wasn't standing up straight .... other than that, from the outside, I don't look sick. I'm also able to prepare my own meals .... and I'm still making my bed in the morning, we all know that's a big milestone! LOL It's definitely not as bad as it used to be starting a new med .... Lyme isn't so much disabling for me anymore, it's just limiting.

[Green12]

.... and I'm still making my bed in the morning, we all know that's a big milestone! LOL

That's a good sign, that the lows aren't as low as they have been

I have a hypothetical question....

What would happen if metals were addressed but lyme wasn't being treated??