Lyme and related sicknesses from the virus

[blackbirdsings]

I have just started treatment for Lyme and am on a medicine that covers all the spiro...(not sure how to spell) but the stuff that makes you so sick.

I have come across several articles saying it can acutally caused NMH and that some doctors like to do Tilts on patients and put them on medicine, and tell them about extra salt, etc. I found that connection very interesting.

This is the best forum I have come across for POTS and just in general. I realize there are a few people on here with Lyme, and have helped me find some good websites. I was wondering if there is a specific Lyme forum people know of, and any articles that might help me. Finding there is SO much more to Lyme than you hear most of the time. All my odd symptoms actually mean something! Trying to learn as much as I can, until I can get to the Lyme specialist. Especially things that can help me until I get there.

Nausua is becoming a bigger problem for me lately. I know alot of you all have that too. I am going bonkers for a hard candy called Gin-Gins. They are a ginger candy type thing, but not too sweet, and they actually help settle the tummy (at least for me). You can get them at the heath grocery stores or order them from the company online. Wanted to share that!

I have also found as misunderstood Dysautonomia is...Lyme is just about as misunderstood.

[Jenn202]

I am SO sorry you have Lyme, But on a brighter note, Lyme is absolutely a cause for dysautonomia, and with further treatment you could feel much better. Of course I am not your Dr, but just from my expereince and knowledge of Lyme and dysautonomia.

Are you seeing a good LLMD? Its important to have one of the Lyme literate Dr;s so that you are properly tested, as well as tested/treated for all the coinfections as well.

www.lymenet.org is a very good site to go to with all the Lyme info you can ever read and adiscussion forum as well.

You can also email me anytime... I would be happy to help you any way I can.

Its hard to get through the treatments but believe me you will come out the other end.

And you are right Lyme is just as or if not even MORE undiagnosed and misunderstood than dysautonomia.... Its a true nightmare of an illness to have...

It also takes time to find the right combo of abx that will help you.....

Again feel free to email me anytime.....

jljlc@sbcglobal.net

Take Care

[bamagirl]

Hi there. I have lyme & POTS too and am on IV antibiotics. I truly believe that lyme has caused my dysautonomia. My lyme went untreated for about 15 years and I am now in the chronic stage. I have a big problem with nausea and burning skin, tingling numbness all that stuff. www.lymenet.org is the best web site for us "lymies". Please feel free to contact me at mesmerize731@netzero.com if you want to chat further. I have been to Vanderbilt, Mayo in MN (Dr. Low) & Jacksonville (Dr. Cheshire) and now Jemsek Clinic in NC for my lyme treatment. I have really gone everywhere I felt help would be accomplished. Hang in there and I look forward to hearing from you!!!

Amber

[blackbirdsings]

I will email both of you, thank you for the support!!! This has been a really rough year. Whenever stuff flairs, I faint worse, and just sitting up in bed (blacking out) is tough...I keep having really bad days where I'm not able to get out of bed, but to go to the bathroom and I can hardly hold my head up. After ruling everything out, and that my symptoms all went away nearly a year ago, the doctor agreed to give it a try. I think I am going to need many months of the treatment with additional meds, but at least I am getting some relief. For the first time in months, I was able to shower, dress, go for a car ride, do errands and even go in stores today. That is a HUGE improvement. Just a week ago, a short car ride wore me out and I wasn't able to go in stores.

Funny thing is even NIH said my POTS was caused by something else, but they didnt know what. I now believe it to be the Lyme and other co-infections. I've been blacking out less on the antibiotic, though some stuff is still hard...still early in treatment. I'm also discovering herx, and feeling really coherant and pretty good, and than suddenly I have tons of symptoms and feel horrible. I am starting to see a pattern in this.

I am now on the waiting list for the doctor in NC. I know somebody that went there and they were VERY happy with him and are still going there. We have asked my regular doctor to do more bloodwork and have it sent to one of the labs that is used. I have yet to see any bloodwork come back related to Lyme that actually shows the bars. The doctors don't even know how many bars I have. We think I have had this for at least four years...tons of tick oxposure but also some spider bites I had bad reactions to, horrible rashes etc. My understanding is that in europe they have shown you can get it through those, mosquitos, flys...though it is rare. In the US they seem to think it is very rare to not possible but I wonder...

I will be in touch...lyme is very confusing and not a nice thing to have to say the least!

[Jenn202]

The other difficult thing abut lyme is that there is so little research.... There at leat 250 strains of Lyme Bacteria alone that have been disovered, and Several hundred strains of the different coinfections....

Lyme is definetly not a "one sixe fits all" disease.

It matter what strain or strains of Lyme and coinfection you have as well as your genetics and immunity, and how long you have had it.

There so many factors in it.

Also the longer you have the Lyme sphirochette in you, the more they penetrate deeper into you, and end up causing your body to stop making antibodies to the infections. After a while the body does stops identifying it as an "invader"

This makes the current testing incredibly innacurrate

Lyme also has a knack of changing form to evade the antibiotics after a while...they can actually change their DNA make up...... so its important to keep on going until you find the combp that is right for you.

Also its important to address candida in your system...eat a healthy sugar free diet as much as possible and take lots of acidophillus as well as a good immune suppoty supplement......

I have gone into complete remission when I get on a high enough dose of Abx...

I went from bedridden and completely incapacitated 8 years ago, to about 80% funstional..... I still have mild POTS, and my hydration issue seems to be my toughest point..... But I have recently switched from Salt tabs to Celtic and himalayan sea salt 1/4 tsp to every liter of water and it has helps along with some other supplements.

I am SO glad you are seeing the Fog lifted a bit!!

Lok forward to your me email

[DancingLight]

Dear Blackbirdsings,

I am currently investigating whether or not I have Lyme. I am finding it to be a nightmare process! Ugh! But, Jenn is an angel and she will help you big time.

I am noticing more and more folks on the site here who have both Lyme and POTS. I have been sick for seven years and it was not even mentioned as a possibility until this past year for me. I still do not know if I have it or not.

Just wanted to chime in with my support to you and wish you the best on this new journey. I thought POTS was a pain in the patootie, but Lyme is even harder to navigate! Holy cow! (NOT minimizing POTS one bit--it's the political/polarized situation with Lyme that makes it so hard!)

Have you been able to differentiate b/w Lyme and POTS? Does that make any sense?

For example, I am often too tired to even talk or type or go online. Even when I am lying down I feel ill. I feel ill every moment of every day and can hardly see straight. Even in my recliner, I will go white as a sheet when I am talking and be so weak. Sometimes I don't know if this is POTS or something else...it's all so confusing!

Okay, I'm rambling and fading and need to go to bed!

Emily

[blackbirdsings]

I'm going to reply in reverse since I can remember better...if that makes sense.

Emily-POTS specialists said everything on me is fine, but something is causing me to get out of whack and syncope. No doctor has ever mention Lyme as a cause of NMH to me. I discovered that in journal articles, and related lyme research. I would like to say I was horrified that no doctor had brought this up before, but alas with all the doozies I've had I'm not too shocked...though it seems like people would have the brains to figure that out. I refuse to have another tilt...they are positive, we can just stand me up and watch the numbers drop and the tackycardia.

The politics of Lyme and how so much is unknown, doctors aren't too up on it, and that the treatment goes against so much of what they say shouldn't be done. Such as the long term antibiotics..no one does not clear everything up and I am finding it can take multiple combos. Not gotten to that point on me, but I think its fast approaching. I am not pleased that politics or kickbacks from pharmacutical companys influence treatment of persons with a chronic condition. I was put on one medicine, when I had requested a different one...well I kept going, I know that name from somewhere. Of course I do...I have seen adds for it on tv and in magazines!!

Your being so tired and getting so pale sounds alot like me. Due to how ill I have become and no other tests have shown anything, the doctor agreed to starting lyme treatment to see what happens, since it had helped so much before (all symptoms went away!). So far it is helping. SO many of my bizarre symptoms and things my body have been doing, I am now finding are very normal and are major pointers to Lyme. I am finding many issues arising, that I can tell only a specialist is going to be able to assist in...such as right combination of medicines, doses, and making sure I am on them long enough (we think I have had this for years, so I am now chronic lyme). Doctors keep saying people shouldn't be on an antibiotic for very long and to save them for major things. Well, I am at a "major thing" and it is making me better. Another problem I am facing is horrible pain that is very specific and worse than anything else I have ever experienced. Advil does not resolve my pain or even lessen it, and I'm not able to take anything less hardcore than some of the major things. Doctors don't seem to understand the Lyme pain, and are trying to get me off the pain meds. I am hearing this is normal for many lyme patients to go through. I know somebody with Lyme that takes far "heavier" meds and much more than me, and has for years. For them that is the only their pain can be controlled and they can even begin to move around.

Lots of frustrations with geetting treated. You tell a doctor you have POTS and that is alot...than you get into saying Lyme and they really think you are nuts. I have had doctors say it is all POTS and I sit there going, no, your misinformed and need to contact somebody at NIH, etc. because you are saying things that are not true.

My POTS is that when I change positions my blood pressure lowers and I pass out or pre-syncope. From that I might get really pale, and after tons of fainting in hot weather I am tired, but bounce back very quickly. I have had really controlled POTS and have been able to be fairly "normal" until I started having all of these odd symptoms. Sometimes showering was hard, but with fluids and extra salt I was pretty good. I do have a swingy tag so when I was driving (not done this in nearly a year) if it was hot out, I could park by the entrance and do okay. One faint in a parking lot, when people kept on going and left me there...the doctor made sure I had the tag and its been a huge help. So there is ALOT that isn't POTS for me, or even most people that is Lyme.

Knowing what my "norm" is, I can differentiate alot of what is POTS and what is really abnormal. My family and friends can also tell the difference. What is interesting, is that on the antibiotic, my blood pressure improves. Than I go back to a low-medium pots day, with some flares, BUT its much less severe. For me, we can see a direct connection, and that seems to go further into the Lyme illness. Tonight I am having a flair, but I think it is the spiro. in my body fighting. Had bizarre electrical charges around where my pain is, than I got a temperature and sweaty, and swelled more. Than some chills, and now I am back to just hurting but don't have anything to take for it, so I am awake trying to distract myself. Hence a long post!

I would really pursue the Lyme, but the biggest thing I am finding is going to a Lyme Specialist. Otherwise, it might be a waste and just add in frustration. It is worth ruling out and in the process maybe the specialist can come up with something to better help you.

JENN-I sent you an email :-) It is scary to know that there are so many different stands of Lyme, than even more of the co-infections. That has got to be incredibly hard to detect those in a person, with so many different ones, and not everybody making antigens-eek! OMG on Lyme being able to change DNA. That sounds like something out of a Sci-Fi flick, instead its real :-( Now I understand more why it can take several different antibiotics at a time, at varrying doses. I read about one drug that is toxic and can be given to patients in a large dose, but only a certain number of times a week. Something about it killing of the spiro. with the cycle of how long they live.

I had some improved days and today seems to be herx...symptoms I thought had gone away (we can be optimistic!) are back and really flaring ALOT tonight. Should I avoid sugar when I get sweet cravings? I find I get those cravings which I hadn't had ever before during some of these episodes...I was wondering if that just feeds the spiro? I was thinking I should add yogurt into my diet each day. I used to eat alot, but haven't in some time...best to prevent yeast overgrowth as much as possible.

I am SO excited for you to have gone into remission on the right meds!!! That has got to be an incredible feeling :-)

bamgirl: I will email you tomorrow. I am interested in knowing more about your treatment and what it is like at the clinic in NC. I am now on a waiting list there, but really need to be seen far sooner. I have heard really good things about the clinic and it sounds like the place to go, despite it being a bit of a trip.

I've said that POTS is enough to deal with, without adding Lyme into the picture. They sure are a slammy, because if a doctor doesn't know what to do they will blaim it on the POTS and what could we possible know about our own bodies?!? Uggghhh...that attitude will change at some point, I hope... I want to get in touch with my dysautonomia specialist about this and bring up the lyme. I don't know if they didn't say anything for whatever reason, but lyme seems to be a huge cause of NMH in so many people. If testing them and treating them would improve or make the syncope go away, I think doctors should really be making the effort to do that for patients.

Thank you to all for the info. and support!!

[DancingLight]

Blackbirdsings!

THANK YOU a hundred times over for your response.

I think one thing for me that makes me feel "not like other POTS folks" is like you said. I DO NOT recover from symptoms after I lie down. That is why I am so weak and debilitated by this. I cannot watch TV, be on the computer or talk on the phone--or just have my eyes open without feeling sicker sometimes. I FELL ILL EVERY MOMENT OF EVERY DAY.

This year, I do not even recognize the body that I am in. I am so much worse and weaker than I have EVER been in seven years. Jewish people don't believe in ****--but, man, if there is a **** on earth, some days I think I am in it. And I am not trying to be negative here--I just feel like I cannot live this way forever and must pursue other possibilities...

I am fortunate that it was actually my POTS doc who brought up the subject of Lyme. I have a POTS doc and a PCP who actually have acknowledged to my face how polarized and political the Lyme community is and how important it is to see a LLMD.

I did have basic tests run by my POTS doc, which came back inconclusive, but he still is encouraging me to pursue it. I want to rule it in or out at this point.

Now, I am trying to find a LLMD.

I am wondering if BAMAGIRL and JENN have things in their emails to you that they might be willing to share on the board or pass on to me???? I hate having folks have to type multiple times the same thing given our low energy levels! Also, I'm really just like a sponge for more info. on Lyme right now, yet no energy to do the research I need to do.

It's such a catch 22 to know I need to pursue other doctors, but no energy to do the work I need to do to find it all and take care of it.

As I have started calling about doctors, each one has a different approach to Lyme. One organization/person recommends on doc and another recommends something else!

I am realizing from your story how lucky I am that I have two docs that don't look at me as crazy with POTS and possible Lyme. I have a PCP who is kind of like Morgan's--he just feels soooo helpless and he believes in me 100%. He 'gets' how sick I am and how sensitive I am to meds/changes. Granted...I LOOK like crappola.

I have noticed that a lot of folks here sort of do okay or even well if they are supine for the day--i.e. can watch tv, talk on the phone, type on the computer. For me, anything wipes me out. Hmmmmmmm......

Well, let's all keep each other informed...I truly beleive this is not at all off-topic and we are lucky to have some other folks to correspond with who have both POTS and LYME together--it makes things different than if the POTS factor wasn't there!

THANKS!

emily

[ethansmom]

I found out I have Lyme also, when I was pregnant last fall. I have not had the time or energy with the two kids to do the research that I would like, but I do have an excellent Lyme doctor here in FL who I thank so much for being willing to do the research to find out what the problem is. He did not treat me while pregnant but I recently went back to look into treatment options, and since I am still nursing the baby he is reluctant to give me the abx that he feels arfe most effective.

I just had a few questions for those of you who are more "Lyme literate" than myself. First of all, what is the name of the antibiotic that kills the sphirochettes?? Did I say that right, LOL?! That is the one that apprently is newer and hasn't been tested on pregnant and lactating women...but I want to do some more research on it. Any good info would be appreciated. I also want to know what blackbird meant by it making you the sickest? In what way exactly?

I am nervous about what to expect with the reaction to the abx initially. How long does it last generally, and how soon before you might notice improvement in POTS symptoms?

I am just happy to know that there is something that may have caused my POTS and it didn't just come from nowhere. I can't wait to get treated just to see if it helps at all.

[blackbirdsings]

Emily-Yea! I am glad you found my post helpful to you. I know you have been having a really tough year too. All of the POTS specialists say I am just not like the others, that I do better and am able to do more than most BUT only when I don't have all the odd symptoms going on and they just don't know what it is. They just say its NOT dysautonomia. You described me so well on many days...being pale, not being able to get up, too much effort to watch tv or do anything. Than I will have a few "decent" days and back to the days that feel like you are in a very hot place.

You can email me if you have questions or need help with some of the research. I have found some articles etc and the website the others mentioned helps. I can get you the links or the articles. I have some time each day where I am energized enough to work on the laptop and do the research etc. Everybody keeps telling me to get to a Lyme literate doctor as soon as possible and to search for the right combinations of meds to treat this. Also, to not give up and hang in there! You sound like you have a good medical team that will work with you.

I have only heard of a few really good lyme doctors. I have a short list of them, and we are trying to get me into one of the clinics. Three month wait! Ahhhhhh....

Ethansmom-I am impressed you are able to do so much, though I am sure it is hard for you. Just taking care of myself is rough, and I am sure it is hard to take care of two little ones. I think there is something about checking the children at some point, but am not sure where I read that. There are several different antibiotics that kill the spiro(I need to learn how to spell the name!). Doxcyline is one of them, but there are several others. I am learning they often need to be used in combinations, of varying doses, alternating etc,. to find what works.

I'm not sure if I understand your question about me saying it makes me the sickets. I'll try to answer, and if I tell you something else, just ask again! I can only begin to compare this to having the worst case of flu imaginable, broken bones, chills, temperatures, upset stomachs, etc. all combined in one that doesn't go away. Everything seems to be extreme. The chills are so bad, it takes tons of warm clothes, covers, heating pads, etc. to help bring me back, and this happens everyday, just about the same time. Everything is extreme, so its the worst. Does that make sense? And than if I faint, its a really hard one, and hard to recover from. Some of the medicines in treating Lyme can cause you to feel better, and at certain time periods you won't feel well and everything will flair again. Can you ask your question again? I don't think I am answering correctly, sorry.

My POTS got better within days, and than I had a little over a day where it was bad. Now I am back to it being pretty decent and not too bad to control. I haven't even had a full week of treatment. My body responds pretty fast, and there are other positive changes. From better color, more energy, less brain foggy, pain not always as severe, and being able to eat. Before I started on the med. my POTS was really bad, and I didn't know why. I have a new doctor that is great, and I have the feeling I need to bring in my NIH papers etc and say okay, things are doing better...I avoided getting into it too much before, but now I realize its important they know how much its helping. I was blacking out sitting up in bed, so than I would get recovered from that, sit on the edge of the bed and recover, get up and hit the floor...though I prefer to say at times the floor hit me! Bad humor...I ran really hard into a doorknob and door a few weeks ago, trying to get to my bed. I thought I would miss the doorframe (those hurt if you walk into them!) so I had my arm out, but was too disoriented. Should have just gotten on the floor instead of trying to walk when I'm about to pass out. I usually do a nice pre-sync and can sit back down etc. I was getting the really doozy blackouts, where you stand and just know your going to faint regardless, and I did. Than I would get a few days where it wasn't so bad and go back to this. I now think this can be linked to the cycle of the life of Spiro. Also, months ago I had surgery and they had to give me alot of fluids that were milky looking-the doctor said it was just because I was small and wasn't phased by the POTS. I did feel better from the extra IV fluids and wasn't so thirsty for about a week...though I was on bed rest for most of that week.

Treatment...I am still learning about this and think it is alot like POTS treatment. ALOT Of trial and error to find what works and will kill the suckers. It can a month of antibiotics if the case is mild and caught soon enough, or it can be 4-6months, or it can be years. I think it varies on the severity of symptoms. They can also do a high dose and get things in control and than do a maintence dose to keep it from flairing...it seems to really vary from person to person. I am also finding out there are IVs that are sometimes needed and shots. I don't know much about those at this point.

There was one website somebody told me...I think International Lyme and they had alot of good info.

Emily-I was concerned this was getting a bit off-topic, but am glad its here. I am amazed at how many of us on here have Lyme and POTS.

This is really loooong now...if I didn't make sense on something just ask me again!

[Jenn202]

Hi Jessica - I would definetly urge you to get treatment as soon as possible and a good LLMD....

Only a Lyme ltierate Dr knows the disease and will give you the proper tests, and treatments... Its very complex as far as abx goes..... You usually need several in combination or IV abx or both..... In my 8 years I have been on:

8 weeks of Doxicyclene

8 weeks of IV Roecefin

61/2 years of IM Bicillan injections

2 1/2 years of Biaxin and Plaqeunil and tetracyclene alternating

8 rounds of Mepron and Zithromax

And I am currently on Bactrim, Augmentin, Malarone, Bicillan. and will be adding Erythromycin and Biaxin......

I think the fact that your Dr will not give you abx b.c you are breast feeding is not a good sign.... Lyme has been known to pass into breast milk....and its more important than ever to be on abx if you do decide to breast feed....

If you post on www.lymenet.org there are many women on there that are in or have been in your boat......

Please e mail me if you need help getting the right treatment.

[Jenn202]

I hope this post is not getting too off topic..... Iknow this forun is for POTS discussion ... Michelle, Nina, please let us know if so b.c I would not want to disrespect the board,,,,,

Also maybe all of us with Lyem can start an email chain to keep connected

[DancingLight]

My POTS doc has talked about possibly trying a three month trial of abx--like doxycycline.

Would it be worth it to just go this route to start while I search for a LLMD? He said it's hard to get it approved, but if I could would this be worth a shot?

Just wondering...

I hope this thread isn't considered too off-topic either...but I understand if it is. It is really helping me a lot to talk to otherw with the two conditions together. We are a rare breed just to have POTS and with Lyme on top of it? Oh my!

Blackbirdsings---thank you so much for your long post. I'm learning so much and feeling less alone.

Jenn--I emailed ya! You are gonna be the Lyme/POTS go-to girl!

I can't believe how many of us have both together!

Emily

[bamagirl]

I too, felt like my POTS wasn't all that was going on. I had more than bad spells while standing. I was having severe neurological symptoms- burning skin, nausea, sesitivity to sound & light, horrible fatigue, muscle twitching, audio hallucinations, loss of appetite, tingling and falling alseep hands & feet, migraines every day, etc...

I went from working full time(I'm an accountant) to WHAM, bedridden. Dr. Low at Mayo, MN was even puzzled when I saw him in 03 that I couldn't hold my head up in his office because I was so weak. He told me most people with POTS aren't so bad that they can't work. WORK?! I couldn't even keep my eyes open & look at this man while he was talking to me. He also couldn't tell me WHY I had dysautonomia. He just said it was "idiopathic", meaning from an unknown origin. I knew then something else was going on. I got in pretty quick at Jemsek in February this year, I was lucky. I tested positive for lyme, bartonella & babesia. Two out of three urine samples also came back positive for lyme bacteria die off a week after I began my antibiotics, so there is no question that I have lyme. I am on my 4th month of IV antibiotics and still nowhere near where I need to be. I have had lyme for about 15 years and it will take years of treatment for me to show any improvement. Jemsek has said that they will not stop treating me until I show improvement, even if it means I am on the IV's for a year or longer!! I will do whatever it takes to get my life back. Guys, I wish I could type more, I just came back from Jemsek today and have been in the car for 12 hours so I am going to need a couple of days to recover. Anyone wants to call me it is much easier for me to talk than type because I may not get on the computer for a week or longer if I am in a flare. I am 32 years old and live near Atlanta, Georgia. I was born & raised in Alabama so that's why I am "bamagirl". I want to talk to each of you. I think we really need to stick together and see what works for us and gain that knowledge. I believe more and more people will see that they have underlying lyme causing their POTS. Take care guys and stay positive

[Radha]

i cant tolerate any abx even tiny dose coz they cause such a strong herx and then the POTS gets much worse, so dont know what to do, how i will ever get better if i dont take the abx, i dont see a way of escape! the herx is so bad, and i have tried many different abx, all the symptoms get even more unbearable, and my bp gets way way too low, wish there was something to take that would lessen the herx, hope you all get some relief,

radha

[DancingLight]

radha,

have you also been diagnosed with Lyme???

i missed that detail about you...sorry!

i have decided that the two of us are twins in the 'guilt dep't' --the guilt you feel reminds me so much of me!

emily

[Radha]

yes emily i was diagnosed with lyme too,although i dont know specifically what species i have, i was wondering if anyone especially steph, if procrit has a chance of working as long as your body is full of bugs, i read somewhere that the bugs clog up the blood and as long as they are there, then your blood voume wont increase, any insight would be appreciated, i wonder if i would be wasting valuable time and money on procrit if i didnt kill all the bugs first, thanks

radha

[ethansmom]

Okay, I am really interested in posting on LymeNet but I cannot figure out how to join!! Jenn?? Help!! LOL!!

I am pretty computer literate but their site is very difficult to navigate. I created a user ID and password but now I'm lost. Maybe it's the kids running in circles around me that makes it just a bit hard to think...LOL

[Jenn202]

Em - I'm on my way after this post to email you back! But yes if you can start Doxi, I would. Its a good basic Lyme drug....it definetly cannot hurt thats for sure!

Ahhhhhh!!!! These Dr's Drive me crazy! I hate the stupid controversy surrounding this disease... Lyme controversy is POTS times 20...its just so ridiculous.....There are thousands upon thousands of people in tis country that have Lyme and rely on Long term abx treatment to function. I am one of them. I am not thrilled that I have to take abx to feel half way normal... BUT I am SO incredibly thankful that b/c of them I can have happiness and enjoyment from my life again......

Jess - Yes Lymenet it very difficult to navagate: If you go to the forum Part ( Lyme discussion) and click you will see on the top where you can Register...you just need a username and they send you a password...... They just redid the site so its even extra hard especially with my brain lately! LOL and I cannot imagine haveing 2 little ones running circles as well! LOL

Let me know if that works for you or not.

bamagirl : You just said it all in your post.... The people who are so ill they can not hold there heads up ( I was one fo them) are usually the ones with tick bourne illnesses...... I have never seen , and hope I dont again, a disease that can be so debilitating in EVERY way...

I remember having to be helped into a Dr's office b.c I could not walk I was so weak, and Could not get my head up and the Dr's faces would have this perplexed look like they had NO idea what in the world coudl be wrong with me.

It was the worst feeling b/c I was SO sick and SO scared and even Dr's looked like I was this crazy case! Welcome to the world of Lyme I guess lol

[DSM3KIDZ]

I found a good website pattyknack.com my mom works with her brother (he's the dentist) and they have been determined to get me to a Lyme literate doctor. So I see one in Oct. I think the 14th. I guess he's suppose to be really good.

Dayna