The Lyme Disease Thread

[ShadowSwallow]

Thank you so much for that excellent advice, Carla. I'm going to print out as much as I can about Cowden, read it, and then try to arrange a time to sit down with her tomorrow and work out a clearly defined, written plan. I thought we had a plan before, but apparently not.

I have an appointment at the beginning of February with the LLMD. As he only sees people every 3 months, if I don't have Mom convinced that abx would be more beneficial than harmful by then, I'll have to wait until May until it even becomes an option again. And if we don't get working on the things she considers necessary to address before Lyme (parasites in gut, some toxicity, and now more and more sensitivities (trying to get to her to see that these are most likely lyme-related)), these next two months will just pass by.

But if we can get everything pinned down with a written plan to hold each other accountable to (well, as I see it me holding her accountable to ), it would be very much a step in the right direction.

[CarlaB]

Since you can't get in until Feb., that gives you an already set time period to try Cowden. I actually can't wait to switch over! Let's hope that it works for you and you don't NEED abx in Feb! But, it's good to be open. After a couple months, and once you're sitting in the LLMD's office, your mom may come around. I know I was dead-set against abx when I first started realizing I had Lyme .... eventually my mind opened up ... it took about two months ... I'm probably your mom's age.

[ShadowSwallow]

Has anyone here gone on abx for lyme with having a past history of, or dealing with, candidia and/or leaky gut at the same time?

How was your treatment? And what did you do in addition to the abx to help heal yourself and/or keep those issues at bay?

[CarlaB]

I had a leaky gut and food intolerances.

I was put on Nystatin along with the abx to prevent candida problems.

I also take saccharomyces boulardii, Theralac, Ultra Flora, and VSL#3. I avoid sugar.

My gut has actually gotten better on the abx treatment than it was before! My food intolerances also disappeared. I have not had candida problems in my 10 months on abx.

[dlp252]

Has anyone here gone on abx for lyme with having a past history of, or dealing with, candidia and/or leaky gut at the same time?

How was your treatment? And what did you do in addition to the abx to help heal yourself and/or keep those issues at bay?

Nope, this is actually one of the reaons why I'm NOT on antibiotics now. From 2002 to 2005 I was on nearly constant rounds of antibiotics for "sinus infections". They started me on augmentin 875mg twice a day for 10 days, plus 8 days of prednisone...I'd feel good for a week, then get the "infection" again. They had to keep upping the mg, so that at the end I was taking 4,000mg A DAY of augmentin for 30-60 day periods. I took a couple of other kinds of antibiotics during that time as well. I did an anti-candida/yeast diet (including a rotation diet version) nearly the whole time and took Nystatin several times. My insurance wouldn't pay for diflucan, so I only got 1 pill of that, lol. Having said all that, I think this may have knocked the lyme back quite a lot in my case.

My doctor took one look at that history and decided to be cautious about the abx. for me, which is why I'm not on them yet. He's making sure my body can handle that and chelation for the metals. So I'm doing the herbal stuff right now. I'm pretty sure with my history of bacterial issues, when he does put me on abx I'll also have something like nystatin too.

Following a very low sugar diet is really important too. I took a couple of natural antifungals as well.

ETA: I also took LOTS of probiotics.

[mftnchn]

Has anyone here gone on abx for lyme with having a past history of, or dealing with, candidia and/or leaky gut at the same time?

How was your treatment? And what did you do in addition to the abx to help heal yourself and/or keep those issues at bay?

Hi, Birdy.

I am sure I had both for many years. Within a couple of years of when I was probably infected, I was intolerant to everything--I tested at the allergist's at one point for 7 weeks every day, and didn't find anything I wasn't allergic to...a universal reactor at that point. Wish I could have treated lyme then!

I have done quite well on antibiotics for most of the last 7 years (gulp!) without too much candida trouble. I take probiotics but haven't found them that helpful. I take antifungals which are helpful but hard on my system. For awhile I took two antifungals. I also take a lot of supplements to support my body and protect it, and take samento faithfully as it made a big difference but only in addiition to abx.

Low carb diet has helped as well.

I think undiagnosed celiac undermined my ability to get on top of the lyme and excrete mercury as well. Am hoping to eventually get on an all herbal protocol as well.

[truthsearcher]

celiacgirls,

I pray all goes well with getting your dd the help that she needs.

Birdy, Congrats on your Lyme progress and your Moms new understanding of your condition.

I have a question about Humaworm with Lyme. I just ordered some myself without the psyllium cuz I just don't move when I take that stuff. It acts like a huge plug when I take it but that's beside the point.

Anyways, should I take it now or wait till after I see the LLMD? Will if affect any tests?

Also can anyone tell me if Lyme affects bone density in women? My ND wants me to get a bone density test done cuz my minerals are wacko and my insurance won't pay for one until I'm 50. Will the LLMD recommend me getting a bone density test done? Should I ask for one if the LLMD dosen't recommend one?

Thanks,

[mftnchn]

I would ask for sure. Especially if you do have celiac along with lyme disease. Good to have a baseline, seems like to me. Will your insurance pay if there is a medical concern? I mean, this is not just a normal baseline for women before they go through menopause.

[CarlaB]

Anyways, should I take it now or wait till after I see the LLMD? Will if affect any tests?

I would take it now ... I don't know it that's the right thing to do or not, LOL, but that is what I'd do.

I don't think it will affect any tests except possibly heavy metals .... but in that case I think it would be stirring it up.

Also can anyone tell me if Lyme affects bone density in women?

I don't know. But if you haven't had good absorption of your food, that could. I'd ask the LLMD about it.

[ShadowSwallow]

Thank you everyone for your stories.

TS - on the forum at lymenet.com there's a thread called Newbie Information. There are many, many topics in that thread about lyme and related conditions. There might be something there on bone loss and lyme.

[aprilh]

Hello! I started at page 1 and have been reading this thread. I just wondered if anyone might give me their opinions.

I am on Humaworm and I read that one of the herbs in that product deal with asperilligus. Last night after taking the Humaworm before bed, I felt slight pressure in my head, and I was FREEZING even though it was exceptionally warm for the season here. I felt like I was "buzzing". This is the first time I actually had a symptom that REALLY pointed me to lyme. Does anyone take Humaworm for lyme in addition to parasites?

After I had my 2nd child, I "think" i found a tick on my bed. I say I "think" because the last 3 years seem like a blur with all the stuff I have been dealing with. I had a rash on my butt-cheek. It was itchy and I have a scar there now. I have no idea if this is related and my memory does not serve me well enough to know if those 2 things happened at the same time. Either way it doesn't matter because i have been bitten by ticks many times during childhood.

I am dealing with fungus (candida) issues. My liver detox pathways are not doing the best but I am taking nutrients for that. I know i have heavy metals although I have not been tested. Just the fact that my children had MANY metals and environmentals show up in their urinalysis, they had to either have gotten it from me through pregnancy or from doing renovations to our house and vaccines, ect. Anyway, I work REALLY hard to feel better by sauna's, minerals, juicing, candida diet, herbs. I have tried chelating but it seems to always make me feel worse. I have trouble with it for some reason. My ND thinks it was because my liver phase II detox pathway was blocked. We will see.

Here is my symptom list:

Pressure in Head - Comes and goes.....Most recent symptom

Twitching of facial or other muscles - i have eye twitches that come and go. They are fewer and farther between now

Stiff or painful neck - feels better after sauna

Jaw pain or stiffness - goes along with the stiff neck

Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose slight

Increased floating spots -this has been resolved

Oversensitivity to light -resolved

Flashing lights/Peripheral waves/phantom images in corner of eyes - resolved

Decreased hearing in one or both ears, plugged ears - ear pressure?

Buzzing in ears - comes and goes

Ringing in one or both ears - comes and goes - has come again since being on Humaworm

Constipation - always had trouble with this.

Upset stomach (nausea or pain) - resolved 99%

Bone pain, joint pain or swelling, carpal tunnel syndrome - wierd painful cyst type thing in my wrists??

Stiffness of joints, back, neck, tennis elbow

Muscle pain or cramps, (Fibromyalgia) - legs have been slightly sore and weak for 1 year now.

Shortness of breath, can't get full/satisfying breath, cough - this got really bad when I candida was at its worst. Came back with recent humaworm

Chest pain or rib soreness - wierd little pains that hit me in different places in my chest and rib area - comes an goes.

Night sweats or unexplained chills - Low body temp - partially resolved with iodine drops until recent Humaworm

Heart palpitations or extra beats - resolved with anti-candida and diet control

Burning or stabbing sensations in the body -Humaworm caused a stabbing pain in my leg, but now is goneFatigue - 95% resolved. Still don't feel up to "par".

Pressure in the head - yes right now! Although not always

Numbness in body, tingling, pinpricks - this was REALLy Bad when candida was at its worst - resolved

insomnia - 99% resolved

Panic attacks, anxiety - resolved

Memory loss (short or long term) - yes especially the last 3 long stressful years.

Unexplained breast pain, discharge - little pains here and there but mostly are resolved.

Continual infections (sinus, kidney, eye, etc.) - resolved with candida treatment

Symptoms seem to change, come and go - yes

Low body temperature - resolved with iodine although had a relapse last night due to humaworm

Increased effect from alcohol and possible worse hangover - TOTALLY mE! Thought this was due to my liver pathways being blocked, though.

As you can see, a lot of my symptoms have been resolved with the candida treatments and liver nutrients. I just have this inner feeling or suspicion that there is still something there. I have not completed detoxing metals so there is still that factor to consider.

Questions: IF I do have lyme, and my body seems to be doing ok with it, can I try the herb protocol on my own?

Have any of you done chelation along with your lyme treatment? If so, what comes first? What about liver detox issues?

I just ordered "healing lyme" by Buhner on Amazon to see what he has to say. I have been researching and researching trying to find some answers and understand this on my own.

Any advice is greatly appreciated! I may have found an LLMD in my area. He has had many court case which I am finding is not so uncommon. I am going to call them and see what kind of treatments they use. I am unwilling to go on abx due to my candida issues. I know that some have to, but I really would want to try alternative treatments first.

I had many more questions, but have forgotten them now.

April

PS sorry such a long post! I will keep it down next time!

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[CarlaB]

Hi April,

With tick bites and symptoms, you definately could have Lyme.

I'll share my experiences and opinions, but I'm not a doctor, so you might want to see an LLMD or talk to your naturopath about it.

First, I talked to the PA at my LLMD's office about the Humaworm. She had never heard of it, and she was surprised by my tapeworm .... she asked if I was sure, I could only say, not 100%, but, it looked like one and like nothing I had eaten, I feel better now, I've gained weight, and my appetite has lowered. Quest Diagnostics estimates 1% of the population has tapeworms, so I'm guessing it was one.

She also said detoxing can make you feel bad like I did for two days.

About the possible Lyme .... back in '91 I had my third flare up where I was practically disabled from fatigue. I had bad jaw symptoms because I would grind my teeth. I would also feel worse after nights of grinding, probably due to releasing mercury from my amalgams, so I had them removed and took the herbs to get rid of metals.

I also started the anti-candida diet and did a rotation diet. I exercised heavily several days per week.

I went mostly into remission until 2003 (I would flare badly during pregnancies).

So, even if you do have Lyme, all this stuff you're doing could put it into remission.

What do I wish I had done differently? I wish I had known it was Lyme and had treated it in addition to the other stuff! If I had, I wouldn't be sick now ... first of all, I would have known stress triggers it and would have avoided the stress that triggered my illness. Secondly, I would have been able to treat right away before I got really sick.

Whether I would treat with herbs or not, I do not know. I think I would have tried it.

Though, on the other hand, we didn't go that route with our daughter, and she is requiring much less treatment than I am. She will most likely be switched to herbs next month after six months of treatment. I'm glad we went with abx and then herbs with her. She has had drastic improvement.

There is no black and white answer to this. Since you are improving and symptoms are falling away, you might look into the Cowden herbs available at nutramedix.com. I plan on getting on the full Cowden protocol when my LLMD thinks I'm well enough to. He has had really good results with the protocol when using it after abx.

The other thing is, you could do all the stuff you are doing, then use abx and end up needing them for a shorter time since you've gotten so healthy.

My LLMD is holistic, but not all are. I know you could talk to someone like mine about whether herbs would take care of it since you're not as sick as you were .... but I don't know whether the one near you is the same ... there's no set protocol at this point for healing Lyme.

I'm sure I gave you more questions that answers, LOL. Sorry, feel free to ask.

[aprilh]

thanks Carla for all the info!

Do you have a link to the Cowden protocol. I thought I had it, but can't find it

I might try the Cowden when I am done with Humaworm. I just ordered Healing Lyme by Bruhner so hopefully I will get some good info there.

I agree, if I do have it, better to treat it now than wait for something bad to happen!

I have only found one LLMD in my area so hopefully he's not a flake!

April

[CarlaB]

You can get Cowden herbs at www.nutramedix.com. They're not cheap, but from what I hear, they're effective. My LLMD says that his wife feels the best she's ever felt on them! She has previously had a problem with relapsing when she gets off abx.

[dlp252]

Hi April!

I'm always suspicious of Lyme when I hear of known tick bites, lol. IMHO, one just doesn't get candida for no reason...SOMETHING allows the balance in the body to be upset. Lots of things can cause that though.

My LLMD is very conservative, and so far we have not discussed antibiotics other than he is very concerned about my past history with them and didn't want to rush into it. I was on nearly constant antibiotics a few years ago for a three year period for chronic "sinus infections". So, my only "treatment" so far has been with herbs...specifically some of the Cowden herbal stuff. I've been doing that mostly on my own, but was originally suggested to me by an ART practitioner, not my LLMD, although I have discussed them with him.

The LLMD has me on lots of supplements to support the detox and methylation pathways. I think that before he actually "treats" the lyme, we will probably chelate the metals, but he just wanted to make sure my body could detox what we get rid of. I think that as long as metals are in the body, it would be hard to get rid of the lyme...just my opinion though.

[aprilh]

I went on the nutramedix site and looked at the different herbs and cowden protocol. If you order from here, does it give you any dosing instructions with the order?

thanks!

April

[Offthegrid]

I'm slowly digesting this thread, and I think Lyme could be a real possibility for me. I have virtually every symptom, although quite a few were worse before the gluten dx, and I have been bitten at least once by a tick.

How is this dx'd? Everything I've been reading says there is no test for it? Is that true? And how do you find a Lyme doctor?

[AndreaB]

Offthegrid,

I'm one of the few that doesn't have lyme (the only one on this thread).

You would need to have Igenex run a western blot for testing along with seeing an LLMD. He/She would run other tests as well according to what the others have experienced.

Go to lymenet and post in the doctors section. Names are usually just posted using an initial when posting on a public forum but I assume people email/message the contact info when you request info.

[CarlaB]

I went on the nutramedix site and looked at the different herbs and cowden protocol. If you order from here, does it give you any dosing instructions with the order?

thanks!

April

I have the directions for parsley, burbur, cumanda, and samento. I can post that. I'll have to look through what Nutramedix sent me and see if there are directions for everything. I got the directions from my LLMD. I'll post about it later.

You would need to have Igenex run a western blot for testing along with seeing an LLMD. He/She would run other tests as well according to what the others have experienced.

Go to lymenet and post in the doctors section. Names are usually just posted using an initial when posting on a public forum but I assume people email/message the contact info when you request info.

Yes.

[aprilh]

Carla,

Thanks for offering to get the cowden protocol for me. Don't worry about it just yet. I was just wondering if any instructions came with the package in case I try to do this myself. Although I would be very interested to see. That was a lot of stuff that came in the package for Month 1.

I was wondering if anyone knows....can I order testing through Igenex myself? Or does it have to be done through a doc. And maybe I could have my ND do it. I know she wouldn't be the best person to treat me considering she doesn't know much about lyme, but if it came back positive then I could followup with the LLMD.

I also realize that many show false negatives. Since my immune system seems to be doing fairly well, do you think that would help me have a better chance at getting an accurate reading?

I know these are probably questions for an LLMD, but just in case anyone has experience!!!

Thanks for the advice!!!

[CarlaB]

I guess it depends on your ND's licensing. Can she order bloodwork?

With the Cowden, it's a good idea to ramp up on many of the products ... I've been taking them for over a month and am only ramping up now on the Cumanda. I didn't want the herbs to cause too much of a herx since I'm already on so many abx.

So, you might not want to buy them all at once in the beginning .... start out slowly.

[confusedks]

Carla you beat me to it...lol! I was going to say that you need a Dr or MD to order these tests. I had a HUGE mix up with a "naturopath" who said they would sign it, but then I found out I needed an MD to sign it.

Again, it depends on whether your ND can sign for these types of things. Ask them...also, some ND's offices have MD who oversee everything, so that may be a way to get it signed also.

Kassandra

[aprilh]

I guess it depends on your ND's licensing. Can she order bloodwork?

With the Cowden, it's a good idea to ramp up on many of the products ... I've been taking them for over a month and am only ramping up now on the Cumanda. I didn't want the herbs to cause too much of a herx since I'm already on so many abx.

So, you might not want to buy them all at once in the beginning .... start out slowly.

She does order bloodwork for me. I will check with her and see.

So what herbs are you on right now? That would be more affordable - to do a little at the time. Did you order that whole package on Nutramedix that is like $369? Has burber, parsley, minerals, cumanda, ect? I guess its a good idea to use switch up herbs - do the bacteria become immune kind of like candida does?

sorry for all the questions!

[CarlaB]

Well, as you work up, I would stay on the ones you get onto .... so each month it would start costing more.

I started out with parsley and burbur, 10 drops three times daily before meals. No need to ramp up.

Then I added Samento at night before bed ... started with one drop, worked up to 20.

Then I added Cumanda .... start with a drop in the morning before breakfast, but not with the parsley and burbur, and a drop before dinner, but not with the parsley and burbur. Work up to 30 drops twice daily. (I'm up to 4 drops).

That is what my LLMD calls the "Limited Cowden."

[confusedks]

Carla and anyone else,

I am going to the LLMD on Friday (as you all already probably know ) and I have a list of questions I want to ask him, but because I have never done this before, I wanted to know if there is anything I have missed or should ask?

The ?'s I have so far are:

-Do you know of any PCP's close to me who may be supportive and willing to follow me in accordance to you and your treatment?

-Humaworm...is it okay to take or should I wait? Any thoughts?

-Should I get the endoscopy/colonsocopy the GI wants to do...to rule things in/out.

-If it's not Lyme...then what?

-When will test results be available? Does your office call with results or should we call?

-What are signs that things are getting better, worse, or not changing?

-How long should I expect to stay on this protocol?

- Will you consult with my current PCP/other dr's who are following me?

Does anyone have any other ideas? I *think* I have everything covered, but I'm not sure.

Kassandra