The Lyme Disease Thread

[susieg-1]

Great Susie, when is your appt?

The scenario you described about your trouble getting your results is SO typical. My doctor told me mine were negative when they were positive. The thing is, if they admit that you have it, they have to ethically treat you for it. So most docs don't want to test or admit you have it when they do.

Carla

No appt yet as office is closed on Thursday afternoons so I will have to call in the AM on Friday. I wonder if test is positive and Dr wants to see me to tell me to take a hike LOL

I don't care at this point as I already have appt in June with LLMD that you recommended. In a perfect world my PCP would work with LLMD regarding treatment!!!

[confusedks]

In a perfect world my PCP would work with LLMD regarding treatment!!!

That might happen. Some LLMD's are willing to talk to PCP's and explain what they are doing treatment wise. And then some PCP's are willing to follow you still. Some are not though. I haven't gone back to my PCP because I see my LLMD every month and my PCP was a bit of a jerk.

[susieg-1]

That might happen. Some LLMD's are willing to talk to PCP's and explain what they are doing treatment wise. And then some PCP's are willing to follow you still. Some are not though. I haven't gone back to my PCP because I see my LLMD every month and my PCP was a bit of a jerk.

It is possible to be treated by LLMD and keep PCP without the primary knowing about the Lyme treatment?? I suppose any illness that arises during Lyme treatment needs to be discussed with LLMD. How this works I suppose depends on the willingness of Dr to work with LLMD

[CarlaB]

When I got sick with an upper respiratory infection, I called my LLMD. I told him the symptoms and asked if the meds I was on would cover strep or whatever I had. He gave me clear directions on what to do. If it had been strep, I would have had to go to another doctor locally to get tested for it, but the LLMD said it sounded like an upper respiratory infection that my current meds would cover, but to call back in a few days if I wasn't getting better.

It's just like when I was pregnant and I went to my ob/gyn if I got sick during the pregnancy. I think it's important for the LLMD to know everything that's going on.

So, in an ideal world, you would have a cooperative PCP. But if you don't, you can still make things work.

My LLMD sends my PCP info about every appt. So, my PCP knows I'm being treated, but I haven't been back since she told me I didn't have Lyme. I don't know what she thinks about it now.

[mftnchn]

I am trying to figure out if I am experiencing a lyme flare or a herx?

This followed a ten day trip away where I was really pushing the limit in terms of my stamina, plus there was a lot of stress around the earthquake disaster. I was quite tense during this time.

Symptoms: poor sleeping again for about 6 weeks, getting worse. No night sweats to speak of. Pain in back and arms with the "nerve" component, kind of a zinging through the arms especially. Mild on Monday, severe on Tuesday, getting better since.

Today, air hunger, fatigue, stiffness of muscles, brain fog. Kind of feeling poorly after ecoffee.

Beginning yesterday, I have a rash on one side of my neck, not itchy or painful in any way, but is raised with lumpiness underneath.

I have a phone appointment scheduled with my LLMD for 6/16 and it is hard to connect from here but I could send an email if necessary. My LLMD is great but focuses now more on treating autistic children so maybe isn't quite as up on everything as the LLMD's that focus exclusively on lyme.

Any thoughts anyone?

Sherry

[CarlaB]

Sherry, do you have monthly flares? Does this coincide with the regular ones if you do?

If not, did you start any new meds?

If neither of those, I'd say it's a flare from overdoing it. You mentioned that the earthquake stirred up old emotions .... and overdoing it on top of that, could have flared up symptoms. I'd really try to get some rest.

I hope you feel better soon.

[mftnchn]

Sherry, do you have monthly flares? Does this coincide with the regular ones if you do?

If not, did you start any new meds?

If neither of those, I'd say it's a flare from overdoing it. You mentioned that the earthquake stirred up old emotions .... and overdoing it on top of that, could have flared up symptoms. I'd really try to get some rest.

I hope you feel better soon.

Hi Carla,

I don't have monthly or predictable flares or herxes, at least I haven't figured out a pattern. And no new meds.

I have been resting since I got home on Sunday. I felt better on the way home Sunday (resting on the bus, and on Monday, but this starting hitting me Monday evening.

Yeah, I am also thinking flare from overdoing it, but worried that it is more flare than herx.

Sherry

[truthsearcher]

Susie,

Sorry to hear your getting the run around.

When you see your LLMD you can list what Dr.s receive info concerning your treatment. I opted not to have info sent to my PCP for lots of reasons. I don't see him anyway and would only see him if I broke my leg.

He's the one who diagnosed me with CFS and Fibro after a 3 minute visit and offered my all kinds of drugs to "fix me up"

As far as I know only the Dr's you list will know your medical information.

Question... How to you calculate your herx cycle. I have a flare on Day 1 of my monthly cycle it lasts about 4 days, so does that mean I herx every 24 days? if my monthly period cycle is every 28 days?

Is my understanding correct?

I'm doing pretty good btw about 60 percent now. About 40 percent 2 months ago. I may go for the bicillin shots in a couple weeks if I stop progressing.

Be Well.

[susieg-1]

When I got sick with an upper respiratory infection, I called my LLMD. I told him the symptoms and asked if the meds I was on would cover strep or whatever I had. He gave me clear directions on what to do. If it had been strep, I would have had to go to another doctor locally to get tested for it, but the LLMD said it sounded like an upper respiratory infection that my current meds would cover, but to call back in a few days if I wasn't getting better.

It's just like when I was pregnant and I went to my ob/gyn if I got sick during the pregnancy. I think it's important for the LLMD to know everything that's going on.

So, in an ideal world, you would have a cooperative PCP. But if you don't, you can still make things work.

My LLMD sends my PCP info about every appt. So, my PCP knows I'm being treated, but I haven't been back since she told me I didn't have Lyme. I don't know what she thinks about it now.

I am curious if LLMD charges you for a call like the one you describe? Is it considered the same as a phone consult?

[CarlaB]

Hi Carla,

I don't have monthly or predictable flares or herxes, at least I haven't figured out a pattern. And no new meds.

I have been resting since I got home on Sunday. I felt better on the way home Sunday (resting on the bus, and on Monday, but this starting hitting me Monday evening.

Yeah, I am also thinking flare from overdoing it, but worried that it is more flare than herx.

Sherry

It sounds more like a flare up to me. I'd take it easy and work on detox. Since you just overdid it and were under stress, I would bet that is what caused it. If you continue to decline over the next few days, I'd call the LLMD, but I'm betting with rest and detox that you'll start feeling better again.

Rachel has some interesting Dr. Klinghardt information regarding emotional trauma ... that could apply here with the earthquake.

Question... How to you calculate your herx cycle. I have a flare on Day 1 of my monthly cycle it lasts about 4 days, so does that mean I herx every 24 days? if my monthly period cycle is every 28 days?

Day 1 of your herx is day 1 of the cycle, so your herx cycle is 28 days. That's nice that yours coincides with your other cycle. My herx cycle is 24 days and really coincides with nothing.

I am curious if LLMD charges you for a call like the one you describe? Is it considered the same as a phone consult?

No, he does not. It's a very brief phone call, just a couple min.

[susieg-1]

Great Susie, when is your appt?

The scenario you described about your trouble getting your results is SO typical. My doctor told me mine were negative when they were positive. The thing is, if they admit that you have it, they have to ethically treat you for it. So most docs don't want to test or admit you have it when they do.

Carla,

Went to Dr this AM and she admitted test is positive for Lyme and put me on doxycycline 100mg 2xday for 2 months. I was so shocked that when I got home I called insurance and had her put back on as my PCP as she has redeemed herself. Please help interpret these result (I have copy of report in my hand )

IgG

Igenex negative

CDC/NYS negative

18 -

22 -

**23-25 -

28 -

30 -

**31 IND

**34 -

**39 +

**41 IND

45 ++

58 +

66 -

77 -

**83-93 -

IgM

IGeneX POSITIVE

CDC/NYS negative

18 -

22 -

**23-25 +

28 -

30 -

**31 ++

**34 -

**39 -

**41 IND

45 -

58 -

66 -

73 -

**83-93 -

what is the significance of all the ** bands?

[CarlaB]

Congratulations on a clear test!!! It is positive! The starred bands are the ones IGeneX thinks are most important. You have some undeniable, Lyme specific bands .... like 31.

I'm glad she's starting you on treatment, though according to Dr. B's guidelines it should be 300-600 mg. doxy per day. I took 200 mg. twice daily.

When is your appt. with the LLMD?

[susieg-1]

Congratulations on a clear test!!! It is positive! The starred bands are the ones IGeneX thinks are most important. You have some undeniable, Lyme specific bands .... like 31.

I'm glad she's starting you on treatment, though according to Dr. B's guidelines it should be 300-600 mg. doxy per day. I took 200 mg. twice daily.

When is your appt. with the LLMD?

The doxy will be 200mg per day and I could always double up on dosage. I see John on June 23. My PCP is of course following standard approved treatment LOL Funny she said the tests indicate a recent infection say in the last two months while admitting that treatment may make an improvement in all the muscle/joint pain which I have had longer than 2 mo's. I did not bother to challenge her thinking. thanks for your support

[dlp252]

Congratulations on a diagnosis Susie!!! That's the first step in getting well. I'm a little shocked at your doctor too, lol!

[CarlaB]

The doxy will be 200mg per day and I could always double up on dosage. I see John on June 23. My PCP is of course following standard approved treatment LOL Funny she said the tests indicate a recent infection say in the last two months while admitting that treatment may make an improvement in all the muscle/joint pain which I have had longer than 2 mo's. I did not bother to challenge her thinking. thanks for your support

Yes, what is she thinking? IgM in normal infections means recent infection. However, in Lyme it does not. They find most chronic Lymies test IgM positive rather than IgG, which indicates long term infection or past infection. They speculate that it's because Lyme renews itself, so shows up as new.

Since your appt. is so close, if you have enough meds to get you to it, I'd double up. I'm not a doctor, so you need to make that decision yourself .... but I'd start with 200 per day, then after a few days, up it to 400 .... so that it lasts you until your appt plus time to get back home and get your scripts filled.

[susieg-1]

Congratulations on a clear test!!! It is positive! The starred bands are the ones IGeneX thinks are most important. You have some undeniable, Lyme specific bands .... like 31.

I'm glad she's starting you on treatment, though according to Dr. B's guidelines it should be 300-600 mg. doxy per day. I took 200 mg. twice daily.

When is your appt. with the LLMD?

Am so excited I messed up post Edit

Carla, what would a positive IgG indicate? It looks like something showed up but not clear enough to be positive IGeneX. I agree that I should double up on meds.... A reoccurance of infection...can this be caused by exposure to another tick bite? Maybe stress? About the time symptoms began I was spending time on deer rich 70 acres that we own and also was caring for very ill elderly parent (now deceased )

Donna,

thanks for your support!!! I am also shocked at Dr.'s willingness to make the positive call. Maybe she will be willing to work with LLMD. She actually told me to be sure and show IGeneX report to the rheumy that she referred me to last month. Rheumy appt in early June and I am only hoping for more lab work that I can take to LLMD!! I did not tell her of pending appt. with LLMD...too much info for now. She is fairly progressive as she agreed to my self dx of celiac and has since done research and has even added celiac panel to her lab req forms! Last month she insisted that there was no Lyme in NY when I first mentioned the possibility!!! Maybe now she will do more research and add Lyme test to her req forms also LOL

Wish I could have a drink to celebrate or maybe choc chip cookie

YEA!!!! doxy in hand and soon to be in mouth!

[mftnchn]

It sounds more like a flare up to me. I'd take it easy and work on detox. Since you just overdid it and were under stress, I would bet that is what caused it. If you continue to decline over the next few days, I'd call the LLMD, but I'm betting with rest and detox that you'll start feeling better again.

Rachel has some interesting Dr. Klinghardt information regarding emotional trauma ... that could apply here with the earthquake.

I agree, it is more like a flare than a herx. Also I am a little suspicious of a babs flare with the air hunger--I am pretty sure it was that instead of asthma this time. No night sweats right now though.

You and others have been on abx that I have never been on, I need to check Dr. E's list again and see if there are some she didn't do ART testing for. I have realized that that andrographis I am taking is an older formula and I don't handle any of the ones with the 4 main andrographides. Curious.

I got to researching yesterday for Chinese references to borreliosis, thinking there might be more using the European name. Came across a lot of info about strains, seems like the main US strain is rare in Asia, that the Asian strains are closer to European strains. Have you come across anything on LN or wherever about treatments needing to be different in Europe? Seems like I am not that typical in what works and I do suspect an Asian strain.

I am doing a bit more re detox, but am not up to a ride into town to find a lemon (can't get them at my local market). I think extra charcoal and chlorella helps but am going to have to keep doing it, it looks like. I thought of restarting garlic but that might kill more bugs than I can handle.

Yes, I remember the Dr. K materials from several months ago when we had a lot of discussion. That topic especially perks my interest due to my profession.

My sense is that the earthquake related emotions have mostly subsided, and I am deliberately not looking at news and stuff to try to protect against restimulation; my contribution also seems to have finished for now as my students are moving to carry on the training. I think my overload was also partly due to having to prepare for a training in this area at the last minute, on top of and in between caring for guests and doing another training. My schedule was starting very early morning, sometimes at 5 am and falling into bed by 9 pm most evenings with hardly a stop all day. Also, I had to present and this is always high stress for me, plus I didn't know far ahead of time what I was presenting. The way I deal with the stress of presenting is to overprepare, which was impossible. So yeah, a lot of stress buttons were pressed. The earthquake initial response is the "heroic" phase where we all rush to try to help, so it was natural for me to have a raised adrenaline and this was also exacerbated by my own earthquake memories. It became apparent to me by the time I heard from my DH who visited the quake zone--I would not be able to handle going, since I couldn't even handle this increased "normal" load. My recent improvement made me too optimistic.

Thanks for your ideas and sorry for the long post.

Sherry

[mftnchn]

Susie,

Congratulations on the diagnosis and start of treatment! I agree on the extra doxy if you can take it. Also just be very very cautious about sun exposure. I was on doxy for several weeks or a couple of months without any trouble with sun exposure, and then one day, suddenly I got so bad in just a few minutes.

Also, start detoxing along with your abx, I forget if you already have a detox regimen in place?

Sherry

[CarlaB]

In typical infections IgG means it was a past infection or a longer exposure. The Lyme bacteria is different somehow and IgG positive or IgM positive is considered positive. It's a clinical diagnosis supported by blood tests .... you have the blood tests now to confirm you have it.

Sherry, I'm glad you are getting rested up and are avoiding stress for the time being. Take care of yourself.

[susieg-1]

Susie,

Congratulations on the diagnosis and start of treatment! I agree on the extra doxy if you can take it. Also just be very very cautious about sun exposure. I was on doxy for several weeks or a couple of months without any trouble with sun exposure, and then one day, suddenly I got so bad in just a few minutes.

Also, start detoxing along with your abx, I forget if you already have a detox regimen in place?

Sherry

Sherry

thanks for the post!! I have no detox regime as yet, can you help?? Now I drinks tons of water, no alcohol, no sugar, (I have had great relief from symptoms since cutting out sugar) no processed food, lots of lean meat /fish and veggies/fruit, very little dairy and now no carbs as I am hoping to lose a few lbs as I gained 25 lbs in 4 weeks just before symptoms got really bad!! And of couse strict gluten-free diet. I take gluten-free daily multivitamin, extra magnesium, omega 3, amino acids and flax seed in as many foods as I can add them to, generic prilosec, and hormone replacement as I am menopausal. I was using sublingual B12 but think I have had reaction so now I want to check with manufacturer regarding gluten. I recently finished a round of Humaworm also.

Dr and pharmacy warned of sun exposure and I will take heed as I regularly get in outdoor hot tub and will spend much of summer poolside. Now I need to research gluten-free sunscreen. any suggestions?

I love all this awesome support

I felt truly at peace last night for the first time in years and sat outside in a warm moonlite evening, planting flowers in my outdoor containers as a homeage to the new lease on life I have been given!!!

[mftnchn]

Susie,

Others can add to this list: Saunas (a certain type only), detox baths with epsom salts and other things, coffee enemas, dry skin brushing, ice water alternating with very hot water showers to increase lymph flow, exercise, are all helpful for detox. Taking binders to help bind and excrete the toxins, like pectin, charcoal, chlorella are important. Also supporting the body's exretion, via liver, kidney and intestine.

How long have you been gluten-free? I forgot if you said that already. I have been gluten-free over a year and still healing. I suspect this is one reason why I have had a hard time getting on top of the lyme. I have been treating lyme for almost 8 years but still stuggle, such as right now when I am having a major flare.

Sherry

[susieg-1]

Susie,

Others can add to this list: Saunas (a certain type only), detox baths with epsom salts and other things, coffee enemas, dry skin brushing, ice water alternating with very hot water showers to increase lymph flow, exercise, are all helpful for detox. Taking binders to help bind and excrete the toxins, like pectin, charcoal, chlorella are important. Also supporting the body's exretion, via liver, kidney and intestine.

How long have you been gluten-free? I forgot if you said that already. I have been gluten-free over a year and still healing. I suspect this is one reason why I have had a hard time getting on top of the lyme. I have been treating lyme for almost 8 years but still stuggle, such as right now when I am having a major flare.

Sherry

I have been gluten free 1 yr to the day after fathers day when last yr 1/2 beer on fathers day caused major joint pain and I decided that I was a celiac. celiac is a clinical dx as I have yet to test bloodwork positive. sorry about your flare I admit that the thought of treating Lyme for 8 yrs scares the hell out of me!!!

[CarlaB]

I use FIR sauna, coffee enemas, water (with lemon sometimes), rebounder/mini-tramp (for lymph flow), exercise, parsley/burbur (from Nutramedix).

Green tea has been found to help bacteria to be less resistant and can make abx work three times as well. So I drink quite a bit of green tea .... I like it iced. I like Tazo Zen green tea as it has a mint flavor to it (Starbucks serves it iced).

Don't be afraid for how long you will treat it. You will start having good days after some time and just learn to manage your illness as you wait to get better. I live a very normal life most of the time, though I am still limited in some ways. I still have bad days, but they're not as bad as bad days used to be, and I have a lot more good days than I used to.

[mftnchn]

That's right. I have had a lot of good days and good periods after the initial months of treatment. I'd like to be farther along but am grateful for improvement.

Sherry

[susieg-1]

That's right. I have had a lot of good days and good periods after the initial months of treatment. I'd like to be farther along but am grateful for improvement.

Sherry

Carla,

thanks for the encouraging comments. I think I will try iced green tea YUM I took 300mg doxy today and felt pretty good. Yesterday was bad but started a new part-time job which is stressful, and was on my feet 3 hrs, always bad for my muscle/joint pain. Today though I actually broke a sweat shampooing the carpet on my stairs!!! I haven't been able to do that much physical work in a long time.. Maybe it's psychological as I just started doxy last friday, but I do feel better. Have decided not to mention Lyme to rheumy I see next week. Med records were sent before IGeneX test results and dx from my PCP. I am going to tell PCP about LLMD appt upcoming and ask to have med records sent ahead. Say a little prayer that PCP will work with LLMD. I need a Dr. that I know insurance will pay for!!

Sherry,

I am so glad that you have seen some improvment and I send good thoughts your way for continued improvement

Praying for more good days for you both