New...Help?

I have been ill for the past 12 yrs. Last week I was talking to a friend who had just been diagnosed with Late Stage Lyme disease.  I knew he was ill with something, but he never could get a clear diagnosis.

When he began listing all his symptoms my reaction was more that surprise because I have been experiencing ALL of what he described plus a few more symptoms.

I have been to specialist after specialist after specialist. None of them had ever even talked about lyme disease.  So I have learned to just 'live with it.'

After talking to him, I began to do some research. All the research I have found (symptomatic) is dead on for late stage.

I called my doctor this morning just to make sure about being tested for the disease ( i can't name all the tests that have been done on me!) And never had a test for Lyme. When I talked to my Dr, he stated he had never heard of Late Stage Lyme..  so here I am this afternoon look for more information and medical articles on the disease and I find this site.!!

I believe that Lyme Disease is what has been making me sick for all these years. I have everything!  Joint and muscle pain, unexplained fevers, migraines, on some occasions weird rashes, clumsiness (and I bruise easily), been diagnosed with depression - anxiety/panic disorder - ptsd - suicide, swelling of joints, bone pain, major fatigue but also insomnia because of the pain, numbness in feet and hands (this was the first symptom that led to get a checkup), increase in allergic reactions to antibiotics and allergy meds. What really bothers me is that I have had recent problems with numbers... adding/subtracting/switching numbers.. etc...I had to close my checking account because I kept switching numbers and ran myself into debt.

I have scoured this site and read almost all posts about this.  Talked to my doctor again, but he is still skeptical that this can even happen.

I have had several tick bites since I was a little girl, Grew up in the outdoors, love the outdoors.  Every year I find ticks either on me or in my house.

I am very frustrated and don't know how to convince my DR to do the tests that need to be to at least rule out Lyme disease.

I am tired of being sick and non-functional.  It may not be Lyme disease, but everything I have read...it fits. It never occurred to me either that it may be Lyme disease, and I should know more about this disease than I do, considering where I live.

Any help on talking to my DR would be extremely helpful.

[margypops]

Wecome kaydey you will geta lot of help here I will give you my long story another time it is very similar to yours ,first I will give the others a chance as like you I havent had much luck with Doctors .

[wonko]

I'm sorry that you've been sick for so long, but hopeful that you may now be on a path to answers/treatment.  It sounds like other conditions have been ruled out, which does make Lyme a more likely suspect as it can mimic so many conditions yet evade testing.

I'm not an expert or anyone special, just a patient dealing with this illness.

I do not think you will have luck convincing your current doctor.  You say that you've been looking around the site a bit, so I'm sure you've read that Lyme is often very difficult to diagnose and treat, and is misunderstood and underestimated by most physicians.

The term used by patients to designate doctors who will help us is "Lyme literate" physician, or "LLMD."  Often times, only an LLMD will diagnose and/or treat late stage Lyme.  Try doing an internet search of "LLMD" plus your city/state, and see if you get any names.  

You may want to also look up International Lyme And Associated Diseases Society (ILADS).  It has content spanning basic Lyme info to their treatment guidelines.  Note that ILADS represents a tiny minority!  Most doctors do not know much about, or even acknowledge, difficult cases of Lyme disease.

Other great info can be found in the book "Cure Unknown" (by P. Weintraub) and the film "Under Our Skin."  Both have informative websites that are easy to find.

By all means, keep pushing your doctor.  But you may well benefit from also seeking out an LLMD.  Many have long waiting lists to get in for initial appointments, especially this time of year.

Take care and let us know how you're doing and what questions you have.

[JackieCalifornia]

Welcome to our Lyme neighborhood.

Many of us have wandered around like you have, looking for answers, until we stumble on something like this site, or a book, or a friend who has had similar symptoms.  I'm sorry it took so long for you to find this clue, but you're here now.

If you can't locate an LLMD in your area, post back and we can scout around a bit.  The ILADS website Wonko mentioned is very helpful in many ways.

Take care --

[Kaydey]

This is the first site I found that actually had ppl who seem to have been suffering like i am.  I have printed out many pages ( sooo many pages) of research on Late Stage Lyme it isn't even funny.

I am not a hypochondriac, I rarely see my DR unless it is something I absolutely cannot live with or that I know I need treatment for.

For me to hear that this disease is not possible for me to have unless it is within a few mo of being bitten really gets my Gaul.   Why don't physicians read the recent articles and data?

Thus far tonight...besides the previous print out from Robert Bransfield, MD., I have printed out three more medical journal articles explicitly  about Late Stage  Lyme.  

The more I research, the more frustrated I get.   I know this is what has been causing me to be ill for so long. And yet I have been forced to 'just live with it.'

[Kaydey]

BTW.. how do I find a Lyme Literate Physician?   I live in South Dakota.   The closest thing we have to a diagnostic unit at Mayo...and I have been there.  

They released me because i was 'temperamental' and told one doctor to 'f'' off after he tole me it was all in my head.

It isn't all in my head. And the more I read about LSL the more angry I get.  

I KNOW this is what is wrong, i know there is treatment (sort of) but tonight i am really getting upset knowing that my own doctor, the person who has taken care of me and my children for 23 yrs, is saying there is no such thing!!!!!

How do I deal with that????

[JackieCalifornia]

How far can you travel, and in which direction? There are people on this site who drive 4 or 5 hours to an LLMD and they find it definitely worth while.

Don't get too wound up about the 'late stage' aspect of Lyme.  You are where you are, and while Lyme is easier to cure in the early stages, that means the very early stages, which most of us are long past before we finally get diagnosed and treated.  Treatment of late stage (aka 'chronic') Lyme is harder and not as certain, but it's not hopeless.  

[patsy10]

Your story is pretty typical for many of us.  We end up doing our own research and figuring out what we have.  You could insist that your doctor order a lyme test but your best bet would be a LLMD.

[Kaydey]

Traveling is the problem.   I am agoraphobic.  For the past few years leaving my house has not been much of an option.   And as I stated before the closest diagnostic DR I will probably find is at Mayo, in Minnesota....If I have to, I am willing to take enough meds to get to me a DR that will actually help me!!!   (that means me being passed out for a couple of hours,, but, hey.....if it will get me a diagnosis that is real... it is worth it...:(    )

[Kaydey]

I still need to find out where I can find a LLD...  It is apparent that my DR is not one of them.

I also apologize for sounding so rude.... I am just frustrated.   I am sure I finally know what is wrong with me, and yet my DR has no clue....

I will do whatever it takes to see a physician who is knowledgeable about this..  if it means me taking extra meds to make me sleep through the trip and to whatever hospital...so be it.

I am just so tired of being tired and everything else.  

[wonko]

You do not sound rude at all.  You sound sick and tired, and we've all been there.  

Does your agoraphobia predate your illness?  I ask because a lot of us with Lyme seem to be susceptible to sensory overload and can be uncomfortable with crowds and big places.

Go to google and enter the expression "how to find an LLMD" and you will find websites offering advice on how to conduct your search.  There are online referral services.  We're not "allowed" to post direct links to them because MedHelp wants you to stay here (and we do, too!) and they count that as promoting the competition.

Try to find an ILADS LLMD.  Some of the services will let you check that as an option.  This ensures that they have some extra exposure to current Lyme treatments.

[Hope75]

Yes, you are just in that angry stage that it seems all of us go in and out of from time to time.  Some more than others (me:).

As they said, try searching for an LLMD on ILADS.  It seems like its a big secret to find one because 1) Medhelp will not let us post 2) Often they don't want their name plastered everywhere b/c they may get in trouble with their state licensing board and etc etc etc.  It's a ridiculous mess b/c the CDC screwed up the entire thing years ago.  You'll start recognizing some of the names of our allies and our "enemies" when it comes to Lyme.  There are certain people who have been with the IDSA, mucking up our chances at being treated.

You need to watch the movie, "Under Our Skin" and read the book, "The Cure Unknown" by Pamela Weitraub (sp? - I think that's the author's name).

If you could possibly get a doctor to sign off on an Igenex Western Blot for Lyme, then you are off to a great start.  You'll have to pay, unfortunately, about $475 and then you can submit it to insurance.  Sometimes, you can slide it onto a non-literate MDs desk and they'll agree - but usually, they'll scoff and say Labcorp or Quest can do that.  Yes they can do it, but no, they won't do it the best way possible and may very well give you a false negative.  

Take care and good luck.  You have found a great group here to help.  They are awesome.:)

[JackieCalifornia]

Anxiety and crankiness are two things I had a lot of.  I could see it happening, and just couldn't stop it.  It's part of Lyme, and overload happens quickly and harshly.  Be kind to yourself, forgive yourself, apologize to your family and friends when it happens, and plow ahead.  Let us know what you decide to do and how it goes -- Best wishes!

[gorbybelle]

I have experienced the anxiety/crankiness too - like Jackie California - I could see it happening - almost like someone else has taken over your body/mind - I couldn't believe some of the things that I heard myself saying!!

I too would reccommend you find yourself an LLMD. as you said 'doesn't matter how you get there - just get there - you will only become more frustrated/angry/anxious if you deal with 'main stream' docs. An LLMD. knows the whole picture of lyme - this is what you need. Lab. tests for lyme are not reliable - an LLMD. is where I would go first - that is once other possible 'illness' had been ruled out.

[Kaydey]

I have an appt on Thurs to talk to my Dr.  When I scheduled the appt, I told her to leave me at minimum 45 minutes to talk to him and show him some of the articles I have found and printed.

Instead of the usual 15 min, she did schedule me for 1/2 hr. (better than nothing.)  I am hoping he sees my profile in these studies. He has been my Dr for years and when it all started (about 1997-98) there were so many tests that I can't even remember them all, however, they didn't do a lyme test, which is stupid because of where I live!

If he doesn't agree to do the testing recommended in these articles then I will find another Dr... and I intend to tell him so.

I will keep you all posted...  and thank so much for your support! I don't feel so alone anymore.

I think about getting here almost everyday, because you have all given me some hope, but that just isn't possible :(  .

[Kaydey]

No, the agoraphobia does not predate the lyme symptoms, if fact the depression began approx 5 yrs after my first symptoms and it slowly grew into other mental illness, I also have PTSD (which does predate, but that is something for another time.)  

You saying that Lyme causes sensory overload is nice to hear (sort of) because I used to be a very outgoing person, always on the go, always in public, and now getting me to leave the house is nearly impossible. The bad about hearing it is that if I don't get help, all my effort to overcome the agor. would be a waste of time and energy.  

I really hate being a prisoner in my home, but it is a better option than being in public.

[JackieCalifornia]

Thanks for staying in touch with us -- I know it's an effort, given how you feel.

A suggestion -- when you tell your Dr you are going to look for an LLMD, try to do it so that it doesn't end the relationship with the current Dr.  You may need him/her in the future.  A problem I run into is that my LLMD doesn't have the time (or actually the interest) to treat anything but Lyme+coinfections, and there are other illnesses and things that pop up over time for which you still need your regular Dr.  And it sounds like you have a good relationship in some ways.

I am still searching for a 'regular' Dr for myself, and it's complicated to do, because I walk in with no history with this person in the white coat and launch into "Well, I have Lyme and here is the treatment I am on ..." and lots of drs just don't want to get involved.  I am generally very healthy except for the Lyme (not even sniffles for the past 5 years, just Lyme -- my immune system must be on overload), but still there are times when I need to see a regular Dr.

Like we used to sing in the Brownies:  'Make new friends but keep the old' ... same thing goes for doctors.

Hang in there.

[Kaydey]

I didn't mean to sound like I would fire him... in fact, it would be stupid of me to so.  He is one of the Dr in town that has studied some immune deficiency syndromes like what my daughter has... she is IGg deficient. So I still need him on board.

But I will tell him (in these words) "If you can't help me, then maybe I need to find a physician that is able to" and go on to say that we still need him blah blah....  i was never going to be rude about it

He really is a good Dr.   just somewhat 'close minded' I guess is the best way to put it.  H*.. I don't know... maybe I am fooling myself about the whole thing.... maybe I should just fire him and find a different Dr.

It will really all depend on how he responds and reacts on Thurs.  I am an educated woman, and he knows that.  He knows my forte' is in research  (Sociologist).  Maybe that will be a point of fusion between us and he will listen.

[JackieCalifornia]

I hear you.  You won't fire him but you'd really, really like to smack him upside the head sometimes.

All the drs I encountered on the way to a Lyme and babesia diagnosis sounded like your doctor, more or less.  Calm, firm, doing their best to deserve the white coat and the stethoscope.  It must be hard for them, to be the 'authority' and then have that challenged.  Once they've been challenged, what other tools do they have?  Not many.  They don't have the time or inclination to discuss the situation with the patient as a grown up ... it's The Doctor Thing.  I see it not only in my doctors but also in close friends and family who are MDs.  They don't know any other way to do it.

Once the drs step away from the security of the CDC/IDSA guidelines, they've nothing to go by, and that probably scares them because that's how they are taught to practice medicine -- with good reason, I might add -- but when the frontiers of medicine are reached, it takes a little more (or a lot more) gumption to go beyond conventional wisdom and try to sort things out.

I got concerned again today listening to Obama tell the AMA meeting in Chicago that there is a lot of money to be saved in medical things by adhering to 'established standards of practice' and 'proven treatments.'  To keep all the doctors on the ranch by limiting practice to the 'standards' of the CDC/IDSA would take away the possibility of being treated for Lyme in the way that works ... bad news bears.

But I digress.  You go, girl, and if you can educate your doctor to be your ally along the way, you will have achieved a great deal.  Heck, when you get well, you will have achieved the greatest thing of all!  

[Chatterbox58]

OMG this is just unbelievable, we are all in the same boat....but not a sinking one!!! Kaydey, I think the Dr's feel intimidated, especially when we know more than them on this topic.  I am waiting for my second set of results to come back, very anxious to see what the WB has to say..the first time two years ago I tested positive for lyme, went on Doxy for a month, rash came back a few months later.  He stated there is no way I was re-infected again.  Well believe you me...I am still sick...I really think if you have lyme, you will always have chronic lyme...anybody have thoughts on this?  Kaydey hang in there and pursue all the tests required.  If you still have the infection I believe the IGm will come back with the bands reactive with a current infection, am I correct by saying this guys?  Also, go with the LLMD if you can find one.  I believe the closest one to me is Springfield and I heard that he is a good one.  Take care and good LUCK!!!

[skarey]

I've read that a pos IGG is more indicative of a CHROINC longstanding infection.  Where as the IGM is for the current/new infection.   I think.   Anyone correct me if I'm wrong on this...

[Chatterbox58]

Skarey, thanks for the input, I am real curious how this blood work comes back...I wonder since I was treated and it was IGm, if it now will go IGg positive...I am learning so much through you guys..I only had one band positive for IGg.  I think it takes 2, I had 2 for the IGm.  I'll keep you posted.  Also, OMG did you watch the trailer on the Under the Skin, that is terrible. Thanks again
Chatter

[Kaydey]

I am not the one who is IGg, it is my daughter, although it is an inherited trait.  

If any of you are diagnosed with IGg or IGm, make sure you see an immunologist! Regular physicians (pardon me) SUCK at diagnosing and making a Rx plan.  But once they get a Rx plan from the immunologist they can usually hand the Rx and monitor the imbalance.  

Btw, IGg is something you are usually born with, but it may not show up until adulthood.  
There are 4 parts to the immune system 1, 2, 3, 4   they are paired up  1/3, 2/4.  Each sector controls certain functions of immunity, eg., the muscles, nervous system, mucous membrane, blood.  Depending on the duo you are diagnosed with determines the Rx you need.

My daughter has the first set.  By now she should have outgrown it, but she one of the fewer than 2% that have not.  And she will probably never be free of it.  

The Rx for this GammaGlobulin therapy.  She first started when she was 1...  after 11 hospitalizations and only a total amount of 6 wks NOT on antibiotics.  At that time the Rx was new, and harsh and painful.  It was injection 1x a week for 7 wks.. BUT.. each week the injections increased, eg., wk 1=1inj , wk2=2inj, wk3=3inj  until the 7th week which was 7 injections.  

Good news for patients today... they put in a central line with a hep lock. And the treatment is IV so no more injections.

My daughter has had her line in since she was 8, it has had to be changed a few times, daily cleaning and flushing must be done.

Good news, she is doing well.

here is a link for immunodeficiency

http://www.immunediseaseeurope.com/ideu/patients/IDF/igg_subclass.html

[Kaydey]

So, I went to my Dr.  It is amazing how much is said by body language.  He took my printouts, said he would 'look into it' but didn't think my symptoms added up to Lyme.  When I tried to talk to him about Late stage or Chronic Lyme, his response was   HMM, I have never heard or read anything about that.  But his face told me he didn't believe me.

He said he would get back to me this coming week 'sometime.'

I did tell him that I wanted him to continue to be my Dr, because he knows my complete history and knows all the tests that he has ordered through the years and that the best bet for us finding out for sure was for him to continue to be my Dr.

I followed that up with, 'but if this is something you don't believe can happen then maybe I should look for a Dr who is familiar with this.'  He said "that may be a possibility" but his body language was ...  You B*  I talked to him for a whole 10 min before he walked out the door.

So, now I am just waiting to hear back from him....doubt it will happen. So on Monday i am starting a search for another physician in town.  Who knows, I might just find one that is willing to work WITH me instead of against me.

[JackieCalifornia]

I'm so sorry to hear this.  Unfortunately, your encounter with your doctor sounds very similar to others that have been posted here.  

For doctors who know anything about Lyme, the term 'Chronic Lyme' can set off alarm bells, because while even the CDC agrees that there is Lyme disease, their rule is that it's easily cured by a short course of abx, and if anyone continues to have symptoms after that, it's an over-reaction of their immune system to a now-cured disease, and therefore there is no such thing as Chronic Lyme.

Actually, I agree with the idea that there is not a separate disease ... it's still Lyme, it just hasn't been cured.

My suggestion, if you don't mind me giving my 2 cents?  --  Look for an LLMD, and if you need your Dr Unfriendly for run of the mill things, then go see Dr Unfriendly.  I would tell him what you are taking for Lyme, if anything, when you see him, just as you would with any other doctor -- they need to know what other meds you are taking to avoid conflicts, right?  But don't expect Dr Unfriendly to be warm and fuzzy about the Lyme or the treatment.  

What is important now is that you find an LLMD and get fully tested and diagnosed.

[Kaydey]

It is late here, After 2 am.   My dr's nurse called me back today (didn't expect anything this soon.)  My Dr, apparently 'read' through the info I gave him.  He rejected the findings. I really thought he would be more open minded, but I did prepare myself for this answer.

I haven't talked to any other Dr. in the area yet.

I am just really disappointed with his rejection.  I gave him less info about my daughters immune system disorder and he was willing to test her.  But he is not convinced enought about the Lyme.

I have just calmed down from the nurse telling me he doesn't think it is Lyme and has 'no basis' for testing me.

There is an Infecious Disease  physician in my State.  I have to get a referal, but I don't think that will be too difficult.  Maybe he will listen to me.

Thanks for all you support, I really do appreciate it.

[wonko]

If you want to ensure that your concerns over Lyme will be heard, seek out an ILADS LLMD.  I've never seen an ID doc, but have read many negative experiences of Lyme disease patients with these doctors.  You could very well keep that appt, but I would suggest working in tandem to see an LLMD (as waits for initial appointments can be months).

[wonko]

OK I just reread part of the thread and realize I'm a broken record, lol.

Good luck and keep us posted.  We're happy to listen and offer (sometimes redundant) advice.

[JackieCalifornia]

I agree with Wonko's comment, pursue treatment on all fronts -- while you are waiting to see the Infectious Disease (ID) MD, scout for an LLMD and begin making travel plans, as hard as that is to contemplate.

I saw an ID early on when I had Lyme+ and he said to me, "I know you're sick, I just don't know with what" -- that at least acknowledged I was ill -- but he had no experience with Lyme.  

Take heart!  If you can survive those Dakota winters, you can deal with this.

[sick and tired 47]

Hi!! I am reading your post with great interest. I am in a similar situation. My friend is being treated for lyme's disease and another friend has a friend with lyme disease. Both are suggesting my health issues could be the result of lyme's disease.
Here is my long story made short. Had a bite and rash in 2000. Did not go to Dr. because I had no problems/symptoms and never heard of lyme's disease. Started having health issues several years ago.... believe it was thyroid, have heart issues( svt), fatigue, anixety at times, muscle spasms, ect.... all things I have never had in my life... always been very healthy.
And I had a lyme test thru quest diagnostics... was told it was normal. Have no copies of test results... so I dropped the lyme issue with my PCP . Now my friends keep saying do more...
Keep me posted on your info.. pass on anything helpful.
I have been thru so many tests, I am tired of being tired and sick of heart racing= having SVT attacks ( heart racing and severe chest pain) and no one knows why this suddenly started happening...
I take synthyroid for hypothyroid, atenolol to control heart rate ( still have pain and pressure and some fast rate at times. I want to end all these meds... there has to be something causing this yet no MD, DO, naturopath, homeopath knows why???
Keep me posted and god bless, good luck

[JackieCalifornia]

My suggestion is:  find a doctor with an enlightened view of Lyme and get properly tested.  If you don't have Lyme, okay, but if you do, then you can do something about it.  

Lyme bacteria like to hide in cartilege and in muscle, and therefore the heart is somewhere they like.  Since you are having heart symptoms severe enough to put you on atenolol, why not check it out?

The first thing to do would be to find a 'Lyme Literate MD', a term we patients use to mean an MD who understands Lyme is something to take seriously.  It's not a formal accreditation.

If you google 'how to find an LLMD' or something similar, you will find links to follow.  Also try the ILADS website, which is a group of MDs who share a more progressive theory about Lyme and possible coinfections.

My best advice:  just do it.  Tomorrow.  And then let us know how you do --

with all good wishes --

[Kaydey]

I have sent out letter and made some telephone calls last week friday (26th)  I don't expect any responses this coming week, but maybe I will be lucky.  

There isn't an LLMD in my area, but some of the Dr's I contacted an neurologists, 2 immunoligists, the Ifectious Disease Dr I had seen yrs ago, and a few newer MD's in the area.  Hopefully, some will contact me.  

The letters were long, and I was just doing a synopsys of my history.

If I don't recieve any answers in the next couple of weeks I will look outside the area....although I am terrified of having to see Dr far away!


sick and tired 47:   I am only 42, and sick an tired.  If you read up, one of the first responses I recieved was about being sick and tired.

All the ppl on this thread...thank you so much for your support...I really mean it. I don't feel like I am going crazy anymore, or that these symptoms are 'in my head."

bless you all

[JackieCalifornia]

You hang in there -- there may be bumps in the road ahead, but when you hit a bump it's proof that you're actually in motion!  You're right, first step is finding an LLMD.  Let us know how you go.

[patsy10]

I could be wrong but you may be disappointed with appts. with neuro's and ID's.  I found them to be a waste of time.  Others here will probably state a similar experience.

[mrs_k75]

Welcome! I love this board. After the last 12 years of my life having weird on and off symptoms I finally realized I likely had Lymes. I was always told by the typical medical professional that Lyme only happened on the East Coast and it is very rare here. Now I learned differently. I had a bullseye rash in SF, CA when I was 12 back in 1988 I never thought to do anything about it because Lymes wasn't even heard about here. I also had a tick bite in Montana in 1998. I am like you, it has been real long road, but this encouraged me and gave me a step in the right direction to get treatment. I am currently being treated for Lyme. Everyday is different. I have overwhelming fatigue and a lot of joint pain. Good luck to you.

[sick and tired 47]

Hi! Update for my situation. I am discussed my "negative" results with my PCP. He said negative simply means not enough bands where identified to warrant treatment or further testing. SOOOOOOOOO, stubborn me is getting copy of report from lab itself ( what a hassle)- not the negative only results my PCP office has.
   I scheduled appt with LLMD about 2 hours away- 1st available appt is 2 months from now and is very $$$.  He tests by Ignex- office said test is done after 10 days of antibiotics- why??- get more positive responses this way???
  Found another LLMD and actually talked to him directly... he currently cannot prescribe meds due to his "lyme treatment" practices. But he answered alot of questions for me and I loved his patience on the phone. He says he checks for lyme by looking under a microscope- is this good?? He can determine the strain of lyme ( says there are over 40) and what treatment method would work. He is also 1  1/2 hours away... and would have to refer me on to someone else for treatment.
   He suggested heavy metal toxicity has very similar symptoms as lyme disease and to check that out.
   My head is spinning from all these calls and info, but I am feeling like I am in charge again.... I know if I get a definite help from PCP if I have proof I have the little critters.  So wish me luck.... I thank God he has given me the gift of "fight" . I refuse to accept that this is "in my head", menopause/hormones, or  ?? just don't know and live with it. NO WAY!! Its hard when you have always been very healthy and very active and bamm!! Not any more.
Good luck to all, thanks for the inspiration. I am praying its not lyme's disease, but at least its an answer. Hard to go to battle when you don't know what or who you are fighting!
Keep me posted all!

[patsy10]

I am not familiar with the test looking at blood under a microscope.  The 10 days of antibiotics is to cause dye off of the bacteria which can cause the body to produce antibodies to lyme.  It is an antibiotic challenge.

[Kaydey]

I did hear back from a local Dr. this morning (oops i guess it is now yesterday morning).  It has taken me all this to digest our conversation.  

He is very interested in my case. He stated his sister suffers from Chronic Lyme ( he is originally from Colorado.)  I sent him a letter only because my 'daughter in law' has seen him several times...he is an Internal med.

He said to me that 'after reading my letter'  he is almost convinced it is Lyme, but we have to rule out MS first, and he has to read through my medical file (which is about 3 inches thick.)   I told him that, he didn't seem suprised.  After I told him that he asked if I had been diagnosed with depressive disorders....    I was not prepared for that question, because I left that info out of the letters and such.  When I said 'yes'  he responded that it is most likely Lyme.

Imagine, an Internest who might be Lyme Literate!  I go it to see him July 9.  But I go to the hospital for them to draw all my blood (joking...but a lot) on Friday.  I also have a LP.   This will be my second LP....hate them, but he is willing to work with me to diagnose  Lyme or find out exactly what is going on with me.

I hope he is sincere, because going through an LP is painful!!

[Kaydey]

About heavy metal poisening.  I have been tested for that, all negative, but that doesn't mean you don't have it.   Some areas of the US are more prone to HMP than others.  

That was one of the first things they checked on me because I had traveled and schooled in different parts of the country.

Don't accept that it is in your head...it isn't.   I have found that out by all the support and feedback have I have recieved from ppl here.

Do get tested for Heavy Metal.  You never know.  I think I would rather have a Heavy Metal Poisoning than Lyme...   at least there is conclusive treatment for that.

[patsy10]

It sounds like you might have found a good doctor.

[sick and tired 47]

Hi!! Congrats on finding a dr.!! The first step in the road to feeling  better and healthy again.
What is the testing for HMP? I have moved a lot, lived in other countries where things are not so regulated... so who knows.
Like you I just want answers....lyme or not. I can fight the battle when I know what I am fighting. This its in your head.... NO WAY... how can my heart be normal for 46 years of my life and then start having arrythmias and thats normal????
After several phone callls I am finding LLMD are few and far... because of fear of losing licenses. Here is Texas there is NO lyme the CDC says... tell that to the people with symptoms and tested positive.
  I am hoping the documentary "Under My Skin" comes here, although I am a little afraid to watch it, probably very upsetting.
Well I vented enough.... have a  Wonderful July 4th All!!!!!!!!!! God bless our country and you all!!!

[Kaydey]

I think testing for HMP is the easiest of all tests. When I was tested it was blood and hair sample testing.  Very simple.   That is the standard.

[Kaydey]

The 9th is coming up soon.  I have had the blood test and the LP...eeww   was in bed for 2 days..the pain was aweful, not to mention that I was in the middle of another episode.  I am so very much hoping that that is it NOT MS.  Lyme can be treated...  MS is just a wait game.

I don't have the results back from the tests yet.  Will get them on Thursday, and yes, I will make sure I get a copy of all the results.

[patsy10]

I'm glad that horrible test is over for you.  I had severe pain and headache after the spinal tap and was flat for a week.  It was awful.  It was worth it though as all the results were normal.  I was also in the middle of a flare.

[JackieCalifornia]

will be thinking of you on the 9th!  let us know how it goes.

[Kaydey]

I got the results from the MS testing....it was all negative  TG!  But I also ended up in the hospital that same day with a flare up of diverticulitis, was just released home yesterday.  Still not feeling that great so I won't be online very long.  

Bless you all

[JackieCalifornia]

Thanks for letting us know the good news -- sorry you're not feeling well.  Take care --

[sick and tired 47]

How or where do you go to get HMP?? Is there a lab and do you need dr order? Is it expensive??? And how accurate is it???
Thank you for any info.

[sick and tired 47]

I have an appt with a LLMD the end of August. It is a 3 1/2 hour drive... but hopefully she can help me. She deals with fibro, chronic fatigue, aids patients, and lyme. One blog said she works with hopeless cases... and helps them.
I am hoping for at least an answer.
Best wishes to all here!!

[patsy10]

I know how it feels to get the news that you don't have MS.  I have been that route.

[Kaydey]

Heavy Metal Poisoning can be done by your primary physician.  They usually scoff at a request for the testing, but it is worth the fight to get them to test you.

If you even have a flashing thought you might have HMP.... Get tested!

[Tanjarine]

I feel as if I have landed!! Finally...after 21 years of symptoms, doctors...blah blah blah - you know the story.

Wow...even my weird lil symptoms tie in. To cut a verrrry long story short I'm in England and at some point (9mnth wait) getting an neuropsychiatric assessment at London's Neuro Hospital and then rehab. I'm trying to see if they have info about it - so that my journey may get easier.

I'm also trying to find a literate md here in the UK. ANy pointers?? Although travel vibrations are currently 'hell'...I'll do it to put things at rest...well maybe the journey in stages lol.

Anyways... I wish you all some peace and harmony. it's great to have a forum on it. I've just found some humour on Lyme. You may have read it before...however here it is: http://www.lymeinfo.net/funstuff.html

Laughter is vital. A worldwide hug to all
Tanjarine

[Kaydey]

Welcome to the world of hope!  I have recieved ALOT of support here...you will too.  Many of the posters have endured this aweful disease for years and know how to find the right type of help!

Hang in there!

Going to check out that link!

[JackieCalifornia]

There are some members here who have ties to the UK.  You might post a new thread to the effect of 'Looking for a UK LLMD' and see what you hear back.  

Dr's names are usually not posted here but are communicated via private message between members.  It seems odd at first, but sometimes drs are harassed for helping those with Lyme, so discretion has become the better of valor.

Welcome, and best wishes to you going forward --

[Tanjarine]

Thanks for that tip for the LLMD. I appreciate it loads. All the best. T

[Kaydey]

It has been a long time since I have posted on here.  I have only had the energy to really reply to messages lately.

I am over the flare of Diverticulitis and a bout of pneumonia. (TG)

Yesterday my doctor took all the blood in my system (just kidding, just seemed like it).  He is sending in for Titer and to another lab that I don't remember the name for other markers for Lyme.  Said it will take 6-8 weeks to get a complete profile back.  

Even though I have been on different antibiotics for the last couple of months, he said that they weren't the correct antibiotics for Lyme. He does believe I have Lyme, especially since I am going through another 'episode.' Which seems odd to me since I just finished some pretty strong and harsh antibiotics.  Same symptoms came back within two weeks of me being off those antibiotics.

So I should get an answer in 6-8 wks..   He also mentioned a new treatment for long-term Lyme.   It was a new treatment consisting of platelets and gamma-globulin treatment, which I am aware of because of my daughter.

We will see what the test results come back, and decide on treatment then.  I have not heard of or read anything about this new treatment yet.