It seems like forever since I first posted having just been diagnosed with LLMD, Dr. H. in Houston
Was it just last June that the line was put in and Rocephin was started at 2G per day for four days then off for three while taking Flagyl. Prior to that I had been taking 500mg of Zithromax for four months.

Summer 2004
The first month I got worse, my red count plumeted, neuro symptoms abound. Dr. H said that the Rocephin was knocking down the bb and that the babesia was flooding my system (reason for low red count) He prescribed Mepron 1 tsp per day.

Nine days after starting the Mepron I dove into the underworld, so to speak. I sat down on the sofa on a late thursday and was competely unconscious for four days. Fortunately since it was the last med added, about day two, my husband didn't give me any Mepron. I describe it as unconscious just as a descriptive way to say I did not eat or get up for anything. I was given meds but dont' remember. It was my 50th birthday and family came,, but no one could arouse me. Since it was the weekend and my view of ER was well known, I was left to rest. On Monday Dr. H. was called and he said my reaction was common to extreme die off and to stop the Mepron until I came out of it. I have no clue and figure if anyone knows if this is normal, the victims here would.

Dr. H. said once I felt more solid, to start the Mepron again at 1/2 tsp per day.........Nine days later. WHAM ! here we go again, this time the initial non responsive time only lasted three days, but the aftermath extreme ill feeling lasted longer.

Again, Dr. H said to half the dose again, although I was becoming very weary trying not to lose hope, now we are into September and month four of the IV antibiotics. By the way, he didn't mention retirement in that phone call and it was just days later we were notified of his retirement and to seek treatment elsewhere.

I already had an appointment with Dr H. set up for the beginning of October, which his office transfered to one of his staff taking his patients if they choose. I guess I figured they would be the most likely to continue where he left off since I've got the IV line already. I decided to give them a try before completely jumping ship and searching elsewhere. Does no one in this office see the crisis, leaving patients midstream with definitive treatment plans not easily removed?

Saw the new Dr. in the old Dr. H.'s office in Houston first week in October. Unfamiliar with the file it was like starting over. But wait, she was looking for ways to shred any and every aspect of the dx. I have a positive result from Bowen so I thought, how can that be disputed. Easy I found out, Bowen is a research lab and she called them, she said that they said their tests shouldn't be used for dx, just for confirmation. Huh? She said the reason I wasn't feeling better was because I didn't have Lyme, thus the Rocephin wouldn't work.
She then elaborates that she has literally re-diagnosed every patient and cut the Lyme patient load by 2/3. She said that the first Dr H. said he knew these people didn't have lyme, but wanted to make them feel better. Why do I feel like a guinea pig? She found plenty wrong with me, but says "no lyme" and suggested hospitalization and recommended other docs to see. She doesn't believe in long term antibiotics, quoting her profession of infectious disease as the gold standard.

A week later I was hospitalized due to alarming lab work. None of this abnormal lab work is new. I've battled with these results for one to two years finding it impossible to find a doctor willing to take me as a patient. Dr. Harvey had qualified the low results of IgG to the lyme along with the other abnormalities. to be honest, I guess I found comfort in his rationalization because thus far he was the only one to give me hope.
He claimed Central Sleep Apnea (severe brainstem disfunction) to be a result of neuro lyme, but I've yet to get further confirmation.
When dx. with central sleep apnea in Jan. I was told that the BiAP probably wouldn't be beneficial. Dr. H. claimed that the central sleep apnea was caused by the neuro lyme and said it would go away when the Lyme was gone. I don't know of anyone know the truth, I can't waste energy on who is right or wrong as the opinions vary. I wanted to believe Dr. H. because the neurologists now tell me that most don't live long with it this severe and it is incurable. But I ask, how can that claim be made if they do not know what causes it? I feel that I should be given a reason for their conclusion, they consider that I'm demanding too much. I am on a BiPAP now....was tested again while in hospital and found it had worsened. I stop breathing for more than 20 seconds over1200 times that night. The doctor's reaction bothered me more than the diagnosis. He explained that out of a 60 minute hour, I was not breathing for 40 of those minutes. I was only getting minimal oxygenated sleep for 20 minutes per hour. He kept asking me how I stayed alive. I said that as long as no one can qualify the dx with a cause, I expect it to go away...silly me.

Now when I say that I am not better than before, it must be considered that there are other serious issues involved that may cloud any progress the rocephin may have done. My complaints were the incredible fatigue, migrating pain everywhere, even falling asleep even while standing at the refrigerator door for a few moments. I was falling asleep at the drop of a hat, even while taking stimulants to keep me awake. While I now have life threatening diseases, just a few short years ago my lab work was very healthy looking. Back then they just kept concluding chronic fatigue syndrome, although I knew it was more like I was constantly fighting infections. while they twiddled their thumbs, my major body systems were being beaten to a pulp, attacked on every front. They only looked the other way.....rarely even acknowledging that I was suffering. For the most part few doctors' believed that I sleep over 20+hours per day. The few that do only provide unwanted pity that is unproductive. My point is that I didn't have to become so ill. You don't either.

October 2004
After over two weeks hospitalized, I've been dx'd with three rare illnesses with no conclusion as to how someone originally dx with allergies in 1998 now has three rare diseases just appear out of thin air. Not counting Lyme...cardiomyopathy and others.
The doctors consulted were neurology, cardiologist, infectious disease, gastero, internal medicine, and rheumotology/immunity said that my immune system had been definately beaten down, but wouldn't even admit an inch on the Lyme theory. An infectious disease doctor came in the first day, took one look at my prior labs, claimed me to be Lyme Free and dismissed himself from the case. Wham , Bam , thank you mamm.

# 1. Addisons disease is one. Not only do I have no adrenal function, (which I knew for a year) But now also my pituitary doesn't produce any ACTH to stimulate the adrenals. Also missing is adequate aldersterone production. ]
# 2. Immune deficiency - No one really said whether it was primary or variable immune deficiency. Dr. Harvey said that it was so hard to get positive lyme readings because of my severely low IgG levels in all sub classes. He said my immune system wouldn't mount a response. When I repeated this to one of the doctors you would have thought I had grown two horns. The four doctors consulted said that my immune system had been definately beaten down, but wouldn't even admit an inch on the Lyme theory. An infectious disease doctor came in the first day, took one look at my prior labs, claimed me to be Lyme Free and dismissed himself from the case. Wham , Bam , thank you mamm.

# 3. Central Sleep Apnea - which seems to be the one most unclear on future. It has been hard enough getting any answers in this field, much less any plan of action. When I asked about long range cure, once again I grew two horns.
When I became ill, I did not ask, "Why Me?" but after this dx, I did ask "Why This?" I don't know if others feel lost as I do.

Those are the ones that seemed to cause the doctor's the most concern.

There are still pending tests on more blood tests, Cardiology tests, and the Lumbar Puncture. Upon checking out, no one explained any of the tests, I was just handed a stack of papers. I found an initial reference to the tap to include the initial report of
CFS, Cytology:
" rare peripheral blood elements including erythrocytes, lymphocytes, and mononuclear cells present."

No one has mentioned that time bomb of a sentence, probably too afraid to touch it.
I used to think it was just me that confused the doctors so. Now I believe they confuse themselves. I marvel at some of the ridiculous remarks they make and wonder if they walk out the examroom door and bang their head on the wall, so as to shake down a database of dumb remarks stored in their brain.

Now the hospital was one of the worst I've ever been at...central Houston. Medication was delivered at random. If they ran out of the scheduled dose, they just substituted what they had. Pain medication arrived anywhere from 4-8 hours, scheduled every 6. Every question of mine warranted only a shrug, dismissing me with a wayward glance.
I would recommend major reeducation in many skills. It seems the tech put a piece of gauze under the IVcord @ my chest and then put the large dressing on top trapping the IV cord between the two. It only became apparent at the dilemma when I asked for the dressing to be changed and it became impossible to pry the cord from between the gauze and adhesive. Unfortunately a slight jerk pulled the IV cord a little and it began to bleed. Other than their use of the external port this provided, they pretended my PICC line didn't exist.

Now WHAT am I supposed to do. The prescribing doctor now retired was who scheduled the insertion. Just days out of the hospital I'm exhausted and don't even know where to begin to look for a new Lyme doctor. How am I to keep all this straight ? The believers from the un-believers? (Of Lyme, that is.)

I had wanted to see if anyone else had such strange Mepron experience or if other Dr. H. patients found better support docs, but I just couldn't raise my head.
The best excuse they can come up with for not recognizing my postitive Bowen test is that Bowen is not an accredited lab ? Common, they are going to have to do better than that. I'm sure they long for the old days when patients were in the dark regarding diseases and not so pro-active. It was clear five years ago, that it was going to be hard to convince doctors in the validity of my illness. I knew that there are always unanswered questions in life, therefore I never asked or demanded that doctor's cure me. I felt I took responsibility for my illness by being involved. Yet without question, I continue to feel "blamed" as if I am only there to make their life miserable. If owners ran their business the way that doctors treat patients, there would be no businesses. We demand quality in the products we buy, and yet over and over again we accept sub-standard care from doctors.....and pay for it to boot.
How many times have I left an appointment with nothing to show for it, yet billed a hefty price just for the privilege?
In my frustration one day, I asked a doctor when would medicine ever learn from past mistakes? Must every emerging disease forfiet an entire generation before they acknowldge the culprit. He said "yes"
"It is a solid medical school teaching to dx mental depression until something becomes national and no longer avoided."
I used to belive the worst thing that could happen was to be ill and considered just a number. Now I know of a worse future. To be a number in a forfeited generation.
So this is what we are leaving our children........... I only had to deal with this illness after my children were almost grown. My son is already fighting it at 21, showing symptoms at 16. I feel him watching me, trying to determine the odds. I don't have any predetermind positive or negative attitude. I just refuse to die until I can teach him how to deal with our medical system. Our children deserve better, because we know there is better.

I guess the additional diagnoses answer a lot of questions why my symptoms seemed so extreme compared to many others. Most of this year I've been bedridden, awake sometimes only minutes per day. I've not used the computer for months and months.

When I first posted, I was amazed at the response from those here. I just want to say that I can never truly express how much this site helped me. I'm sorry that my participation was so remote, I intended to try and participate more. Even though I expected herxing, I feel my symptoms had the added burden of the endocrine and immune system disfunction along with the brainstem forgetting to tell me to breathe , minor details, huh?
So where's my head after all this? For a long time I was motivated by anger at being pushed around. Now I don't have the time or energy to play these games of who is not to blame. I just want to have the best life for the longest time possible.....I shall try to find out as quickly as possibe if a doctor is thinking along these lines. If not.........bye

Although everyone here never chastises for anyone for taking support and disappearing, it has been important to me in my quest to hold onto some kind of "value added core" to my being. You start to feel pretty worthless when you cannot move.
I have had several computer crashes. At first I blamed sypware, but now I'm beginning to think neuro symptoms are worse than a computer virus. At any rate,to the wonderful people who emailed me, I've long lost your email addy's .

There is no doubt. I need your help. This is the only place I knew to turn. I know that I could live and deal with this if I didn't hear this clock ticking in my head. the doctor's won't even give me a "maybe" whether treatments will work or not.What, oh what am I paying for ??

I wanted to post here that when I first started lyme treatment, I went on the biaxin/flagyl.

This REALLY helped my adrenals... I could tolerate stress much better after being on this combo a month or so. I had no idea that lyme was affecting me this way.
Before starting lyme antibiotics, I was in a state of fright all the time, and feeling ready for a breakdown 24/7.

I had to start off with only 60mgs a day of the biaxin because the herxing was so severe... both the mental/emotional herxing as well as the physical.

I was on this combo for about 6 months.
Worked my way up to 500mgs of the biaxin a day, and 500mgs of the flagyl a day.
Most others were doing double this, but I could not handle it.

Possibly this combo may help you.

Zithro helped me somewhat, but stopped working about 2 months after being on it.
Possibly I had had my best with the macrolides so the zithro did not work as well. Zithro did REALLY help me with an autorimmune like condition that was very severe... I had severe dry eyes, lungs, throat, mouth... and suffocation.
Zithro had the moisture back 70% in about 2 weeks time.

I am now on the Doxy, just doing low dose... 100mgs twice a day, and work up when I can handle it.

take care, and hope this helps,

Also, dont know if you have treated the yeast, but yeast/candida can REALLY cause one to be sick, and adrenals or other areas to not funtion to par.
Nystatin or diflucan may help... if what you are experiencing is candida related or partly candida related.

I have gone back on the nystatin, and my nervous system is much better....
Both lyme and candida play parts in my sickness... lyme being the worst, but if candida is not managed, I just get sicker.

Hope you can understand this message, going through a herx and not up to thinking that well.

Can't believe that a LLMD said to ignore sleep apnea as severe as yours. Sleep apnea puts a strain on the heart and you could die in your sleep.

There is a Dr. S in Kansas City who is a lyme endocrinologist -- maybe she could help?

Please don't give up and enlist family and friends to help you get the needed medical care. I know when you are sick sometimes it is hard to ask for help and even harder to sort out the truth when the doctors can't or won't listen to the patient. Finding the right doctor is absolutely essential to recovering your health.

How do you do?

Not so hot right now I see! Sorry!

But..

I DO see a "spirit" in there that isn't going to give up.

Soooooooo.. I think you are "stuck with us". I'll bet we can help too!

I read your post.. and there are many things to address.

It is about 2 AM... and to be honest.. I am not able to sort this all out right now and provide a decent response that I think would be of value to you.

Hopefully you won't mind if I get some rest before trying to respond with what may be some helpful info?

I am hoping others will visit too and give you some good words of advise.

In the meantime..

Please know we DO care and we will do what we can to help you on the road to recovery.

And please note.. I have seen folks in your condition.. and worse.. who HAVE gotten better.

Soooooo.. don't jump ship. Not yet.

OK?

Now.. pray for a clear brain for me tomorrow. I am going to need it for this and other things going on.

Name of Support Group: Lyme Disease Network
Contact Person for this Group: Brenda Pitts
Contact Person Telephone: (972) 636-3575
Contact Person E-Mail: [email protected]
City:
State or Province: Texas
Country: United States
Regions of your state / province served by this group (i.e. south-east Pennsylvania): North East Texas
Your Name: Brenda Pitts
Your E-Mail Address: [email protected]
Other Information: Toll Free Fax# (413) 556-1891
URL For Support Group:

Comments:
Please, all Texans with lyme disease, contact us!
We need your help with this support group. When this first time ever support group started in Texas, the Texas State Health Department said there was "no' lyme disease in Texas. Of course, we knew there was and continued this effort to get it recognized for the treatment of humans with lyme. One family has taken live ticks to a lab and proved that those ticks have the bacteria.

Then one of our Texas Senators became infected with Lyme Disease, unfortunately, but due to him contacting this awful disease, he has helped us to get it recognized for the sick people with Lyme whom now receive the proper treatment, thanks to this senator.

It was very hard to find a doctor in Texas who treats Lyme and even more difficult for a doctor to give us the proper diagnosis causing unnecessary long term deterioration which caused patients Lyme disease to only progress, which has caused many lawsuits, well deserved. The east coast doctors will give the correct diagnosis of lyme disease. Many Texans have been forced to drive these long distances for treatment because there is only a couple of doctors who qualify to treat Lyme Disease in Texas due to the neglect of the Health Department publicizing the figures of Texans infected with this disease. We have all stood together so wonderfully for these doctors that they are now being listed as heroes now after years of fighting for them. The reason for the medical neglect finally being investigated, as to why doctors would not give the proper diagnosis of Lyme, has happened because of the many senators, etc., whom have now been diagnosed with lyme disease. When our senators got involved, this has made a change so much needed, for Lyme diagnosis.

Please help us by sending letters to the many different senators, etc., that I will e mail to you periodically. This is very important!

Also we need "all" of you to send me your e mail address so I can contact you. If we all come together, we can do anything! I now have over 200 members and I thank each of you for your continued help even though I realize you are sick and do not feel like doing all that you do for us. For this, I thank you so.. much! I would also like to help those of us that are on disability. We have to work together and change the amount of funds and the bizarre waiting period to qualify for our own money. Disabled people loose their homes, etc., due to this length of time the government takes to get disability cases approved. I am trying to unite us in this effort. Please contact me and consider helping me lobby for this also, and I promise if we stick together as in the past, we will accomplish much more. If you know of anyone in jails or prisons whom are suffering with this disease, please e mail me with this information and then I ask "all" of you and especially you attornies, to help us get them help. The Human Rights, Senators, and many other groups has helped me so much in this area also and I am very greatful.

Let's continue working strongly together!

Thanks,
Brenda Pitts
[email protected]

:::::::::::::::::::::::::::::::::::::::::::::
Name of Support Group: Dallas/Fort Worth Metroplex Lyme Support Group
Contact Person for this Group: Danney Ratcliff or Jennifer Dunn
Contact Person Telephone:
Contact Person E-Mail: Danney: [email protected]
Jennifer: [email protected]
City: Arlington
State or Province: Texas
Country: USA
Regions of your state / province served by this group (i.e. south-east Pennsylvania): North Central Texas
Your Name: Danney Ratcliff & Jennifer Dunn
Your E-Mail Address: Danney: [email protected]
Jennifer: [email protected]
Other Information:
URL For Support Group:

Comments:
We meet the second Sunday of every month at 3pm. Please contact either Danney Ratcliff or Jennifer Dunn for directions to the meeting.

:::::::::::::::::::::::::::::::::::::::::::::

Name of Support Group: Northwest Houston Support Group
Contact Person for this Group: Teresa Lucher
Contact Person Telephone:
Contact Person E-Mail: [email protected]
City: Houston
State or Province: Texas
Country: United States
Regions of your state / province served by this group (i.e. south-east Pennsylvania): Northwest Houston
Your Name: Teresa Lucher
Your E-Mail Address: [email protected]
Other Information: The meetings will meet the first Sat of each month, starting with Nov 6, 04 at the Kindred Hosp. at 11297 Fallbrook (off of 1960 - NW side of H Houston). Time of meeting is 1:00 pm in the cafeteria
URL For Support Group:

Comments:
The Northwest Houston Lyme Support Group Advocates for all PWC`s with Lyme, CFIDS,FMS and all Autoimmune Disorders. If you are interested in meetings, please contact Teresa Lucher by email. Thank you.

Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.

Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.

How to Search Courtesy of Danq
LymeNet Links for New Members
Newbie's Lingo

Lyme Disease Audio Network
Dr. Joseph J. Burrascano's Treatment Guidelines
CDC Website on Lyme Disease
International Lyme and Associated Disease Society

Lyme Disease Symptoms
Rashes
Co-IinfectionsThanx M

Rose's 15 Facts for Newcomers
Making the Most of Your LLMD Visit
Camp A and Camp B, The Lyme Disease Contoversy
2nd Version Camp A Camp B

Why You Can't Trust Medical Journals Anymore
Something to share with friends and family members But You LOOK Good!

Labs
MDL
Igenex Labs

Western Blot Info
FDA It is important that clinicians understand the limitations of these tests

Explaining Borreliosis (Lyme) Western Blot Tests
Explanation of Western Blot Bands
Igenex Labs on the Western Blot
Melissa Kaplan's Lyme Website Explains Western Blot
Dr. C Explains Western Blot
- Not present
+ Low
++ Medium
+++ High
+/- Equivocal = indeterminate (there, but not as intense as Low)

Drug Interactions and Other Drug Info
Drug Digest
American Medical Women's Association Tiscali Reference Encyclopedia
Herxing
What Is a Herxheimer Reaction?
What Is Herxing?
The Herxheimer Reaction

Check Diet Link Atkins Diet
Sexually Transmitted ???
Transmitted Through Sex?
Sex Question-Serious-Adult Content
Video On Demand: Blood Supply May Be Source Of Lyme Disease Infections
Good Site Canadian Lyme Disease Association
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GreatSite
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( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. )
See this ( . )thats the size of the larva stage tick...
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
Pretty small????? HUH

Marnies......... Ten Points Regarding Mg and Lyme Disease
In a Nutshell P1

In a Nutshell P2

Canlyme MAG

Help with Meds

Vitamins you should Know

Tests Synonyms Guide

Lab Tests Looky

Unfortunately, it sounds like the person who took over for Dr. H is a duck. The remarks about Bowen show that.

If you were positive on one or more tick borne diseases thru Bowen, then you are definitely infected. And if it wasn't diagnosed and treated early, big trouble.

It is also possible that you have additional health problems, but tick borne diseases do cause a heck of a lot of symptomns. Then when you add in individual reactions to drugs, side effects, herxes,..... well, it gets really complicated. Tick borne diseases are serious business.

I am so sorry. I am having trouble.. even now.. figuring out exactly what to say.. and usually I am not at a loss for words. Ask anyone here! HA!

I do think the post is a bit too long for MY current state of mind. I am not able to absorb all of it in one sitting. I appologise. I AM trying!

I am going to shorten your post to only the actual questions you asked by looking for question marks.

Maybe that will help me and others understand exactly what you are asking? Maybe I can see the big picture and perhaps what you may need in order to help yourself? I hope so.

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

You said...

"Does no one in this office see the crisis, leaving patients midstream with definitive treatment plans not easily removed?"

HEY.. won't ya PLAY.. another... somebody done somebody wrong song...

Mac Davis I do believe? Nice song.

Yes.. you were royally dumped on.. or off. NOT a good thing. I wish this hadn't happened. If I could.. I would fix that situation.

But alas.. I can't. Soooooo.. we are going to have to pull ourselves up by the boot straps and move forward.. inch by inch.

Are you ready for some FOOTBALL?

You said.. "When I became ill, I did not ask, "Why Me?" but after this dx, I did ask "Why This?""

HA! SORRY! Gotta giggle a little, ya know. Yes.. many of us delighted in the fact we FINALLY knew what was causing all of our problems.. but then... WHAM!

You are RIGHT! WHY THIS? Couldn't I have gotten a disease that didn't hurt.. didn't make me loose everything I cared about and everything I owned.. took me from the mountain top to the bowels of "McDonalds".. and leave me a run down wicked witch to boot!

And why couldn't the treatment just work.. once and for all? Why couldn't the treatment have been 3 chocolate ice cream cones a week... for 6 weeks.. instead of poison on top of poison.. and THEN.. having to ditch everything you hold dear to fight this off?

To answer your question...

Mr. Jimmy Buffet says it quite well..

"Brother life's not over,

It's just SIMPLY complicated."

And then he said..

"It's alright to be CRAZY,

Just don't let it drive you NUTS!"

Remember that. OK?

You said.. "Now WHAT am I supposed to do. The prescribing doctor now retired was who scheduled the insertion. Just days out of the hospital I'm exhausted and don't even know where to begin to look for a new Lyme doctor. How am I to keep all this straight ? The believers from the un-believers? (Of Lyme, that is.)"

I think we have your answer.. YES!... and after deciphering all of this.. the answer comes down to only FOUR little words. But they are important words!

FIND A NEW DOCTOR!

I THINK we are on a roll here.

You said.. "I had wanted to see if anyone else had such strange Mepron experience or if other Dr. H. patients found better support docs, but I just couldn't raise my head."

Again.. THERE is the "MAGIC" word.. right there... buried in your own words...

DOCTOR.

You said.. "The best excuse they can come up with for not recognizing my postitive Bowen test is that Bowen is not an accredited lab?"

Key word here?

"they"

Which equals- DUCKS!

Do yourself a favor.. DUMP the dummy ducks.

FIND A NEW DOCTOR!

You said.. "How many times have I left an appointment with nothing to show for it, yet billed a hefty price just for the privilege?"

Key words..

DUCK BILLS!

FIND

A

NEW

DOCTOR.

You said.. "In my frustration one day, I asked a doctor when would medicine ever learn from past mistakes? Must every emerging disease forfiet an entire generation before they acknowldge the culprit. He said "yes" .. "It is a solid medical school teaching to dx mental depression until something becomes national and no longer avoided.""

Key words here..

DUCK POOP! (Ok.. I added the word POOP.)

What to do?

FIND A NEW DOCTOR!

You said.. "Even though I expected herxing, I feel my symptoms had the added burden of the endocrine and immune system disfunction along with the brainstem forgetting to tell me to breathe , minor details, huh?
So where's my head after all this?"

Key word here-

EDUCATION

FIND A NEW DOCTOR!

"There is no doubt. I need your help. This is the only place I knew to turn. I know that I could live and deal with this if I didn't hear this clock ticking in my head. the doctor's won't even give me a "maybe" whether treatments will work or not.What, oh what am I paying for ??"

More-

DUCK BILLS!

You need EDUCATED people helping you.

FIND A NEW DOCTOR!

````````````````````````````````````````

Well...

Looks like we may have stumbled across something that MIGHT just help!

Now.. after reading all of this information ... many many times.

My BEST advise would be to go see.. and you WILL have to make up your mind to travel a bit...

Dr. C in Missouri.

You can play around and wonder.. and wait .. and hope.

But until YOU make up your mind to do what you can and go to a doctor who will KNOW, LISTEN, and WORK WITH YOU...

You will be grinding your wheels and stuck in low gear.

That's my story.. and I'm sticking to it.

Hope it helps.

And most of al..

I hope soon you will be feeling better!

I will try to make sense but tonight is a bad brain night. Thats why I don't come here anymore often as I feel like I never make sense--this neuro is tough.

Just want to say how sorry I am that you got messed up with that Houston office. I, too, started off there and had problems from the get-go. No sense in details.

Others here will have more on this than I do but it was advised at one point during this illness that I get evaluated by Dr. Bryan Fallon at Columbia Pres. I had so much other stuff going on and was told he would track everything down--Spec scans---tons of tests--he would put it all together and send results to my LLMD. They would talk and come up with a plan.

That would better serve us all as we were dealing in multibles--not just Lyme-Babs-Ehrilic.

I was going to go but it was more than I could afford-they required a 2-3 or more day stay and that someone had to come with me. Guess so-a Lyme dead brain patient trying to manuvere NYC and be where I was supposed to be at the right times. Duh!

My daughter saw Dr. Burrascanno when she was ill---lots of tests done at Cola. Pres.--I was sick, too, but managing. We made it through.

Don't know what your situation is and I am waiting for folks to chime in with why it might be a not so good idea. C'est la vie. I have heard negative reports on some of the clinical trials there but this is not one of those. Would do it if I could.

Then I would take all the compiled info ASAP to Dr. C.----I feel the LLMD's are great with the Lyme issues but when confronted by multiple illnesses they refer out to specialists and then work with them.. At least that has been the case with me.

Just a suggestion--but please do something right away. If not NY and a LLMd then a LLMd for sure right away.

Wishing you the best of luck and hoping you will be clear enough to make decisions based on what you feel is right for your complicated condition. I so relate.

Let go of that Houston clinic---as I think you said you have. Forget it-blow it off--you just were in the wrong place at the wrong time. Move on quickly.

I am so sorry for all that has happened to you.

Once you are on track you will see some sunshine.

From one who has had a battle for 63 years and similar to yours.

Chocolat

She told me that the WB was not reliable and I need to take the Bowen test!!!!! I also got the same run around about ABX, Dr. H.'s incompentance and that Lymes is not what is wrong with me!

I pretty much have given up! I am taking Cat's Claw and waiting for some answer or a literate Dr. to surface.

Just when I felt justified in my Lymes DX, the carpet was pulled out from me . . . again.

Hang in there . . .sorry it happened to you to! Let me know if you find someone (Dr).

Please keep searching!