New...Help?

[Kaydey]

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.

[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.

[Tanjarine]

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

[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 --

[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!

[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]

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!

[patsy10]

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

[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!!

[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.

[JackieCalifornia]

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

[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]

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

[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.

[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.

[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.

[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!!!

[patsy10]

It sounds like you might have found a good doctor.

[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.

[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!!

[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.

[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!

[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.

[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.

[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.