The Lyme Disease Thread

[dlp252]

I haven't heard of that. What's it for?

I'm not sure exactly what the Free T3 and Free T4 measure, but I know that most doctors DON'T test the Free, so it's good at least he did that. I hope he got the antibodies too.

[truthsearcher]

Hi April.

I don't detox well either.

I was wondering if Rachel could post some Klinghardt stuff on the detox pathways again or let us know where to find it. I googled and can't find what Rachel posted awhile back.

I'm on day 14 of Humaworm and doing fine. No adverse side effects... this is a good thing, but haven't seen anything unusual either.

Take care everyone.

[truthsearcher]

Hi I just remembered I had a follow up apt with my expensive holistic Dr. who doesn't know anything about lyme tomorrow.

I'm praying she'll do a courtesy and sign for the IgeneX test for two of my kids, otherwise I'll have to wait till March and have the llmd sign for them. This would be time saving to us to have an answer for the kids before I head to the LLMD.

Please say a prayer for us Thanks bunches.

[aprilh]

Truthsearcher,

I hope you get what you need for your kids. I know how frustrating it is to have to wait!

Anyone,

What does lyme feel like? Right now I am having a pretty rough time. Just out of the blue, too. I thought I was going to start my menstrual but only spotted. Now nothing, but it feels like my adrenals just totally went out of whack all of a sudden. I am dizzy, especially when turning over in bed or getting up. I am sleeping really wierd - heavy but not in a good way. Not sure how or why this happened all of a sudden. I don't really know what to do for myself at this point.

Oh well.............

April

[confusedks]

What does lyme feel like?

Now, that's one LOADED question, lol. It's obviously really different for everyone. I don't even know how I could describe it to anyone. I guess for me it's a lot of unexplained symptoms, fatigue being the most problematic for me. Dizziness is really a big one for me as well, I went to the movies tonight and I got SO dizzy walking up to my seat my friend had to grab me.

[celiacgirls]

I finally got my daughter's IGeneX test results back. They are:

IGeneX IgM Result Negative

CDC/NYS Result Negative

18 -

22 -

23-25 IND

28 -

30 -

31 -

34 -

39 IND

41 ++

45 -

58 -

66 -

73 -

83-93 -

IGeneX IgG Result Positive

CDC/NYS Result Negative

18 -

22 -

23-25 IND

28 -

30 -

31 -

34 IND

39 +

41 +++

45 -

58 -

66 -

73 -

83-93 -

I'm interpreting this as positive enough to feel good about pursuing Lyme treatment. Even though she has a lot of the symptoms and did have that bite, there would have been more doubt in my mind if this test had been negative.

We have an appointment on Jan 22 with the PA of the LLMD in Louisiana and another appointment in late Feb. with the LLMD in Missouri. The one in Louisiana is closer and actually on our insurance plan but we wouldn't ever see the LLMD, just his PA. I'm not sure how I feel about that so I'm getting a second opinion from the one in Missouri. I'm going to try to get our pediatrician here to talk to one of them and start her on antibiotics now.

She hasn't been feeling well for several months and has only been going to school 1/2 days for most of the school year. I am glad to have an answer and a direction.

Thank you for posting this thread. I'm not sure I would have considered it if I hadn't seen it here.

[Rachel--24]

18 -

22 -

23-25 IND

28 -

30 -

31 -

34 IND

39 +

41 +++

45 -

58 -

66 -

73 -

83-93 -

You can be very certain that your daughter has Lyme and that you now have an answer....the 39 band is the most specific for Lyme. There is nothing else that would cause that band to be positive.

She is symptomatic and has a positive band 39....the LLMD should start treatment based on the results. I'm glad you have an appt. set up.

Very good news that you now have direction...and your daughter *will* get better.

[dlp252]

Please say a prayer for us Thanks bunches.

Laurie, sending up a prayer that you will get some answers and that your doctor will sign for the tests.

What does lyme feel like?

Kassandra is right...it's different in everyone. I think that's why the symptoms list is soooo long. Not everyone gets all the symptoms, but those you described are amongst the most common I hear. I had EXTREME dizziness...not like the room spinning, but more like my brain was disconnected and floating. It was really, really bad last year, but now is much better. I get joint stiffness and achiness, and that seems to cycle...sometimes it's really bad for no apparent reason, and sometimes not so much.

My adrenals, neurotransmitters, etc. are TOTALLY messed up...I'm taking specific supplements to help them out, and it is helping, but I think until I get the lyme and all the other issues under control, I'll probably have to keep up the supplementation.

Insomnia is a bad one for me...along with weird dreams. I sleep, but sometimes I am aware of just barely being asleep if that makes any sense.

Lyme sucks. Stupid lyme!

I finally got my daughter's IGeneX test results back. They are:

Karen, I agree totally with Rachel...a very positive test! I know you were wishing it was different, but I'm glad you have an answer and now treatment can begin. Your daughter is luck in a way in that she will get treatment while she is young...it could have been like many of us who have had it for many years and didn't know it!

[aprilh]

I finally started my period! OMG I can't believe what my body just went through trying to start my period! It was crazy! Thank goodness I am seeing this new doc today.

[truthsearcher]

April,

I'm relieved your period came.

Lyme for me right now is poor cognitive functioning (severe brain fog), off balance, clumsey, burning prickely neck and back pain. Heat and cold intolerance, joint pain, achy, bruised feeling all over with weakness, fatigue, Moodiness, sluggish bowel. I always feel like the flu is coming on. Those are the main ones for me right now.

celiacgirls,

I am happy you now have concrete data to start treatment. Let's pray you have very knowledgeable Drs to help you.

Update on my apt today.... Dr. signed for the 2 IgeneX tests for the 2 eldest, I got the ok to get my Dexa scan for bone density. The Dr. did admit she knew little about lyme let alone how to interprete the test. (I'm thankful she was honest about this).

Dr. also gave me a script for Doxy 100mg 2 per day. I accepted the script but will not take it until I've done more research. I don't know if it will mess with my March apt. and from what I read it's a very low dose, almost too low so not sure if I'd feel better or if it would stir up the Lyme being so low a dose.

What do you all think?

Other than that nothing new or exciting to report. I paid my 95 dollars for my 10 min visit and was on my way.

Oh and I wanted to mention too that I do not have the liver pathway function test available to me in NY through Genova. Dr. told me maybe if I go to my LLMD in PA they will be able to order a test that would be able to test my detox pathways. NY does not allow this test among many others. UGGGH

Laurie

[truthsearcher]

Carla,

Congrats! for both you and your dd from the OMG thread.

Heres hoping Cowden gets rid of the last bit of lyme, you've worked so hard to get this far.

All the best to you and your family.

Laurie

[Clark Bent as Stupor-Man]

looks like this thread has a lot of activity nowadays, not just carla posting every other reply

I've been taking cat's claw daily for a couple months now... will probably start bumping the amount up soon, just got to schedule another appt with my llmd first to discuss things... I don't plan on going back on ABX any time soon... I only did the 2 months of mino last summer and hopefully it at least killed some of the bugs off... I may choose to go the long-term ABX route at some point in the future but it didn't seem to be putting me in the right direction at this point...

I just got Buhner's book "healing lyme" and am going to read that soon... my plan as of now is to focus mostly on more benign herbal protocols, probably nothing too extensive even as far as these protocols go... and of course continue with everything else I'm doing: exercise/physical activity, dieting, regulating my sleep schedule, etc... also probably going to look more into some other possible things I'm not as familiar with like glutathianone and proper mineral supplementation...

Dr. also gave me a script for Doxy 100mg 2 per day. I accepted the script but will not take it until I've done more research. I don't know if it will mess with my March apt. and from what I read it's a very low dose, almost too low so not sure if I'd feel better or if it would stir up the Lyme being so low a dose.

100 mg of Doxy twice a day is certainly not a low dose... in fact, I think it's the standard starting dose typically recommended by LLMDs... I was given a RX for that dose for doxy as well as minocycline, which is a nearly identical drug in the same tetracycline family...

also, I know a fair share of people including myself have experienced very pronounced vestibular symptoms when taking minocycline, particularly at the higher doses like 100 mg 2x a day (I went down to 100 mg once a day for the 2 months I was on it)... it may have been the lyme being stirred up but either way, I still have those balance symptoms at times 5 months after stopping the mino though they've been decreasing in frequency and severity the past 2 months...

I'm not sure if doxycycline shares the same potential to cause vestibular symptoms (I'm inclined to think it doesn't but can't confirm that) but I'm sure some research or posts on lyme MBs could provide an answer if you wanted to look into it... there also appears to be a relationship between these vestibular symptoms and a patient's weight with those who weigh less (like myself) being more prone to getting these symptoms.. I have a study printed out somewhere and it's probably easy enough to find on pubmed by searching for minocycline and vestibular

[CarlaB]

Dr. also gave me a script for Doxy 100mg 2 per day. I accepted the script but will not take it until I've done more research. I don't know if it will mess with my March apt. and from what I read it's a very low dose, almost too low so not sure if I'd feel better or if it would stir up the Lyme being so low a dose.

What do you all think?

Laurie, I just don't know. Can you call your doctor's office where you have the March appt. and ask? Usually Doxy for Lyme starts at 300 per day. It's bacteriostatic at 200 ... meaning, it prevents bacteria from multiplying. It kills the bacteria at higher doses.

Carla,

Congrats! for both you and your dd from the OMG thread.

Heres hoping Cowden gets rid of the last bit of lyme, you've worked so hard to get this far.

All the best to you and your family.

Laurie

Thanks, I got home last night and was waiting till this morning to update on this thread.

looks like this thread has a lot of activity nowadays, not just carla posting every other reply

Thankfully! I'm glad it's taken a life of its own as I'm no medical person so it's better to have answers from a broader number of people.

Charlie, you might research Cowden herbs at nutramedix.com. They include minerals, heavy metal detox, and adrenal support just with their "Full Cowden" protocol. It's not cheap, but it doesn't require you to think about what all to put together. It comes with a chart to keep track of it all.

It's a six month program, then you switch to a limited version. It will be about $2000 in its entirety for the six months.

Okay, now for the update. I had a great appt. yesterday with my LLMD! I have been feeling about 90%-95% for a couple months now, except when I take Tindamax to stir up the cyst form, then I drop down to 50-70%.

He took me off all meds except for minocycline (100 2X per day), Plaquenil, and Lariam (for babesia). He put me on more adrenal and thyroid support as he thinks some of my remaining symptoms are more along those lines due to having been sick for so long. My tests show low-normal range. Some doctors question whether the ranges are accurate and think some people need to be out of the low-normal range, so we're giving it a try.

He also thinks I need to focus more on detoxing, so I'm going to be taking saunas every day now. Also, many of the Cowden herbs are for detox, so is the Cowden protocol diet, which eliminates dairy, soy, peanuts, and corn.

He said I could use glutathione cream during my flare ups which are two days long every 24 days.

He has me taking grapefruit seed extract for the cyst form, but said that at some point we may use the Tindamax again.

For the next month, we're observing how I do off most of the meds.

I'm really excited to be off them! I think it will be good to do all this detox/adrenal and thyroid support.

He said that not everyone responds as I did to treatment, that my immune system is really strong.

I didn't respond to everything here ..... it seems everyone got good answers already. I'm glad everyone is progressing in diagnosis/treatment and that there are those who discovered what they had because of this thread.

[truthsearcher]

Charlie,

So glad to meet you! How has the Cat's claw helped you thus far? and other than vestibule problems why did you decide on not taking the abx? if you don't mind sharing Was it making you too sick?

I too am very leary of abx. I know first hand what overuse did when I had chronic sinus infections,BV and chronic mastitis over the almost 10 years. I don't think going into this my immune system is very good and I don't want to make it worse.

Thanks for your experiences shared with the doxy. I will call my (not yet seen)llmd to console with him first about taking doxy.

I too am underweight so vestibular problems may be an issue for me. I already get off balance and dizzy so thanks for the warning.

Charlie, It may be a good idea to figure out whether you body is able to detox before you detox. Have you any tests done to determine this?

Ive got to order Bruhner's book as well.

Here's to better health!

[Clark Bent as Stupor-Man]

Charlie,

So glad to meet you! How has the Cat's claw helped you thus far? and other than vestibule problems why did you decide on not taking the abx? if you don't mind sharing Was it making you too sick?

I too am very leary of abx. I know first hand what overuse did when I had chronic sinus infections,BV and chronic mastitis over the almost 10 years. I don't think going into this my immune system is very good and I don't want to make it worse.

Thanks for your experiences shared with the doxy. I will call my (not yet seen)llmd to console with him first about taking doxy.

I too am underweight so vestibular problems may be an issue for me. I already get off balance and dizzy so thanks for the warning.

Charlie, It may be a good idea to figure out whether you body is able to detox before you detox. Have you any tests done to determine this?

Ive got to order Bruhner's book as well.

Here's to better health!

Hey, just to make it clear, it wasn't the doxy that gave me the vestibular symptoms, it was the minocycline. I never actually filled my RX for doxy, which I was considering taking a couple months after I stopped the mino.

I found the study re: the side effects of mino, particularly the vestibular ones, in relation to gender and weight:

click here for the study abstract, a free full text link is also available on this page

I can't say I know for sure how the cat's claw is making me feel, but it seems to be helping a little... when I took the cat's claw one time back in april, 2007 while I was awaiting my Igenex test results, it made me feel very spacey and whatnot, but I haven't experienced anything negative like that in the past 2 months since starting taking it daily... I'm taking a very low dose right now though and have moreso just been trying to get headed in the right direction again like I was early in 2007 before starting any more substantial treatment again...

I stopped the ABX for a couple reasons... one, I had regressed overall since starting them although that may have been in large part due to 3 weeks out of 2 months being eaten up by 3 attempts to bump the mino dosage to 100 mg 2x per day, which caused me severe balance problems lasting 5-10 days each time... I think I also had a worse general feeling, more of the brain-fog, and worse headaches at times, but I don't know exactly how pronounced all this was... my LLMD also recommended stopping the ABX at the time to check into some other things...

I did feel significantly better than I had on the ABX and decent overall the next few weeks after stopping the ABX... the balance symptoms then returned for a week, went away for 3 weeks, came back for a week, went away and then returned on a less cyclical schedule on a mostly daily basis with varying intensity, and have since decreased in frequency and severity but are still present at times... the neurological symptoms as well as hypoglycemia are still my primary focuses but the balance symptoms can be very intrusive for a few days when they come on strong and I don't recall having these symptoms prior to the ABX, certainly nowhere near this level had they existed in some form...

as for testing on the body's ability to detox, I haven't had any done.. not overly familiar with the specific testing so if you could provide any details on this, I'd appreciate it..

[truthsearcher]

Bless your heart Charlie, you've been through a lot.

It sounds as if your body is over burdened.

And yes I understood the mino was the one that caused the vestibular probs not the doxy. Thanks

As far as the ability to detox, I am new to this as well. I'm trying to find a test that will look at how well my body/liver metabolises substances and look at the 2 pathways/ or phases the liver uses to get rid of toxins.

So far I found Genova does such a test, but is not available in NY (stupid NY). Doctors Data does one as well I found out, but heard from others it wasn't as good of a test so here I ponder what to do. I know for sure I have issues because of my many chemical sensitivities.

I see my llmd for the first time in March, and may have to wait and ask then.

I simply cannot be having debilitating herx's when on anything because I have 3 small children to care for 24/7. Daddy is wonderful just by working long and hard to pay our medical/sups and food bills so I need to be able to function.

Take care Charlie, Lord willing we'll get there

[CarlaB]

I simply cannot be having debilitating herx's when on anything because I have 3 small children to care for 24/7. Daddy is wonderful just by working long and hard to pay our medical/sups and food bills so I need to be able to function.

It's hard on spouses ... today I told hubby to stay in bed until he wanted to get up, not because he had to get up. He stayed in bed till well after lunch time. He's worn out from taking care of all of us with me being so sick. I was completely debilitated, but I was already before having any herxes.

It took four years to get a diagnosis, so I was in really bad shape by the time treatment started.

It's such a relief to be functioning again ... in fact, I beat him in racquetball tonight.

[Sweetfudge]

K, tried to read through the thread, but I'm tired, and cramping, so I am just gonna ask my question...can't handle 22 more pages...sorry if this is a repetative inquiry

My husband had lyme's disease about 7 years ago, and was treated for it. But they didn't get it the first time, and a year later it flared up again. Went through more treatment, and he seemed to recover completely. Mostly as I know (before we got married), he was just having joint problems, maybe some digestive.

Anyway, my question is, can it still be bothering him badly? He's got the most irritable bowel...almost as bad as mine

If he has been fine with his joints and other symptoms, could this still be a lingering effect or permanent damage? I don't know much about lyme's. I'll try and get through the thread tomorrow

If anyone knows though, I'd greatly appreciate it!

Thanks!

[mftnchn]

Sweetfudge, if they didn't get it the first time (6 weeks of treatment right after the tick bite) it becomes chronic. After that, it can be a long battle. Relapses are very very common because most doctors undertreat. Digestive problems can be a major symptom. See the symptom list at the beginning of the thread for some idea of how this can present.

[aprilh]

As far as the ability to detox, I am new to this as well. I'm trying to find a test that will look at how well my body/liver metabolises substances and look at the 2 pathways/ or phases the liver uses to get rid of toxins.

So far I found Genova does such a test, but is not available in NY (stupid NY). Doctors Data does one as well I found out, but heard from others it wasn't as good of a test so here I ponder what to do. I know for sure I have issues because of my many chemical sensitivities.

I have had this test through Genova. I started to become VERY sensitive to herbs and supplements and my ND said this is usually a sign of the liver not detoxing properly. So the Genova test showed my Phase II liver detox pathways were not functioning properly. I take specific supplements for this. I can post the list if you like? I find them to be very helpful. After a few days on these supplements I was a lot less sensitive. She did say people with MCS usually have some type of liver dysfunction. It's almost like your "liver bucket" gets full and can't process anymore.

It happened to me after I tried to chelate/detox on my own without a good plan in place and before knowing about activated charcoal.

[CarlaB]

Sweetfudge, he definitely could still have it. If it relapsed, he was most likely under-treated the second time around as it takes a long treatment to eliminate it. Most doctors won't treat it until symptom-free.

I would suggest looking at the beginning of the thread at the symptom list.

My GI symptoms all came from the Lyme and I ended up not even being gluten intolerant!

If he has many of the symtoms, I'd look into finding a Lyme literate doctor (LLMD).

[truthsearcher]

April,

I'd love that list of stuff for the liver. Thanks.

And unfortunatly I don't do well with charcoal and when I had it tested by EAV body clearly did not like it, so that's out for now.

I've done milk thistle, dandelion, licorice, a mediclear product that is suppose to detox the liver and I do lots of vco and ghee which bypasses the liver as it does not need the liver to be processed.

So needless to say I've tried lots. The candida diet as you know over the past two years for me has helped tremendously with the lessening of the mcs symptoms for me but there are still sensitivities.

Thanks for all the support here you really know your stuff.

I rely on all of you folks, cuz my short term memory is shot, and processing things with lyme is so difficult for me. so thanks again.

Laurie

[aprilh]

April,

I'd love that list of stuff for the liver. Thanks.

And unfortunatly I don't do well with charcoal and when I had it tested by EAV body clearly did not like it, so that's out for now.

I've done milk thistle, dandelion, licorice, a mediclear product that is suppose to detox the liver and I do lots of vco and ghee which bypasses the liver as it does not need the liver to be processed.

Here is what I take for the liver. This REALLY helped me not be so sensitive to things. I still react and have had to watch what toxins I come in contact with but, as far as herbs and supplements it helped tremendously.

B12 shot (in the ND's office)

Activated B6 (p5p50)

Glycine

Molybdenum

NAC

L-Glutamine

Be sure to take them together. The b12 shots I do as needed, but I had a reaction initially by taking the NAC by itself. The ND said to take it together because they all work together to do its job.

I do dandelion tea. I also juice for the liver: Carrots, beets, dandelion leaves, parsley, garlic - things like that. I got some juicing ideas from the Liver doctor. (www.liverdoctor.com)

If I eat a lot of sulphur containing foods or drink wine with sulphites she said to take Molybdenum and NAC to help process the sulphation pathways.

NOt sure but there might be more info on Genova's website about this.

Apple pectin fiber is a binder, too, although I don't think it absorbs as much as activated charcoal. Do you test well for that?

[Rpm999]

holy poop, lyme came back positive....like i said, i just know the test is a western blot one but it wasn't like it was a false negative or anything so i guess i definately have lyme, or something similiar

[dlp252]

holy poop, lyme came back positive....like i said, i just know the test is a western blot one but it wasn't like it was a false negative or anything so i guess i definately have lyme, or something similiar

Well, at least now you know what you are battling!