Please Help Me ASAP

Hi - Is there anyone willing to talk over the phone. I am losing my mind and to the point where i no longer trust doctors --- I have certain things that show up abnormal in my blood and also tested positive for Lymes by ELISA and WESTERN BLOT. I need to talk to someone who has gone years with no diagnosis and has been diagnosed with Lymes after years of searching. Is there anyone out there that can pls help me, I feel like Im going to drop dead any day now if I dont get some help.....

Hi Neurogurl,

I developed quite a few NEW symptoms after starting on antibiotics. It was like the Lyme spiros got stirred up and ran for cover in different places or 'came out' of places where they were dug in and were dying off. Or something like that!

Many of my old symptoms-- pre diagnosis-- had either disappeared on their own before I started the ABX (not unusual with Lyme) or they came and went and then came back. This was why it took a while for me to 'think' Lyme.....and seek a Lyme diagnosis.

My tests were negative and I was only and truly diagnosed with Lyme by the LLMD I finally went to see. All previous doctors 'suspected' Lyme but under treated me with ABX....or they didn't think I had Lyme at all and would no longer prescribe ABX and basically blew me off.

As a result of that I had a few pretty serious relapses-- and was on and off low dose ABX for several months while I went round and round with these NON LLMD'S.

Now I am being properly and agressively treated by my LLMD and getting better.

As for your stomach issues: Doxy is often notorious for poor toleration in certain people. It can upset your GI tract-- especially when NOT taken with a full meal.....or when taken with any dairy products.

It didn't bother my stomach-- but I was one of those people who just didn't absorb it well no matter what---and it only seemed to make my symptoms worse.

Please get in to see an LLMD as soon as you can. They will diagnose you on symptoms-- not on blood tests.

And don't worry--- though Lyme is scary and can make you feel like you're on death's door--- you're not. :))))

Start taking a good probiotic to address your GI issues-- drink Kefir and eat a lot of yogurt. This will help to get your gut back in working order. Best to 'get back to normal' before starting any ABX your LLMD will prescribe and perhaps Doxy just doesn't suit you. There are other ABX options.

HI Nurogurl,
Please be sure you are going to see a doc that follows the ILADS standards, not the IDSA standards. You can find a link to ILADS in our "New to Lyme?...Start here!" thread, but for your convenience here is that link:
www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

You would do yourself a huge favor if you would read through the "New to Lyme?" thread at the top of the forum, as it has a ton of info and some really great links so that you can learn more about what symptoms are typical for which infections, how to detox (which you really should be doing right now, even before any treatment is started), and much, much more!!!!

With that being said, I was one who went for years and years (actually decades) before getting a diagnosis. I believe the 'panic' type of feeling that you mention is fairly typical of someone in your situation. I know I sure had that feeling for years! Like yours, my body was screaming that something is very wrong. Hang in there, as Lymester said, most likely you won't 'drop dead', although you may be very ill. However, if you are having symptoms of a heart attack, or severe pain especially in the chest, head, or intestines - don't wait!!!! Get to your nearest emergency room. Those can be indicators of something serious and immediate.

July is only days away!! You can make it!! There are things that you can start doing now though, that will only benefit you, like using detox baths and detox foot baths, dry skin brushing, and drinking a close as you can get to 64 ounces (that's just 8 - 8 ounce glasses) of lemon water.

Hang in there, read through the "New to Lyme?" thread and we are here to answer questions, address concerns and encourage you!!!

I hope this helps a bit!!!!

This helps so much, thank you thank you! I share a lot of the same symptoms and I must say ... I am pretty sure I have Lymes. I mean honestly...have you EVER heard of a positive Western Blot (I think 2 bands) being false positive? I can't imagine testing positive on ANY bands if you didn't ever get infected. Also Cat, at the time my infectious disease dr said that bc I never had heart block and no fever / rash that I didn't have Lyme and had me stop doxy. Do you have or ever had heart block?? I do get palpitations, rapid heart beat, one or 2 episodes of SVT.

I totally agree with Lymester !  And Traveler !

Due to my 'indeterminate' and then a 'negative' blood test.... 

......one of my early idiot doctors actually said that because my heart wasn't affected in any way, that I didn't have Lyme. He said my 'aches and pains' were all in my head and I should go see a shrink.

Another said my stiff neck and elbow pain wwere caused by ordinary arthritis and that I'd have to live with it-- again not Lyme.

Another said I had Thoracic Outlet Syndrome-- not Lyme-- and that  my painful ankle was because my calf muscle was tight.

Another said my stiff neck was a muscle spasm-- not Lyme and that the vertigo (walking into a wall) was Labrinthitis and would go away in a few days.

The infectious disease doc did believe I had Lyme....but so what !!!!  He undertreated me and soon wouldn't respond to my phone calls when I wasn't getting better.

So to all of those IDSA doctors I say:  "How is it that I no longer have 95-100%  of my symptoms once I was properly treated for Lyme + babs.  by an LLMD? "   

 

Sad sidebar:  All of these IDSA doctors laughed, shook their heads and rolled their eyes when I asked them if I should go see an LLMD----or test with Igenex. 

 

Quack, quack, quack. 

 

You are doing the right thing, Neurogurl, by seeing an LLMD.     

 

You must take your health into your own hands !! 

 

 

 

 

Thank you so much, all of you.....what a wonderful group of people...so supportive, helpful, understanding .... I don't any of this from my own doctors, people that are supposed to help you find answers to your symptoms/problems....And, Im not saying that these doctors are not human .. I understand they are only human and do not have the answers to everything...but, they don't even listen, they dont take me seriously, they want either a quick, easy diagnosis or a text book case. That is NOT always the case...And the fact that I have been complaining for 5 years now...and this year is the worst, you think by now one of these doctors would TRY to help me....I cannot wait for my apt in July!!!!!! I did find an infectious disease doc but just realized its not an LLMD :( I need an LLMD in either RI or MA pls help! Also, here are my results.....any thoughts??
I hope this makes sense to you...
Lyme Immunoblot
66 KDA Reactive H (IGG) Interpretation IGG negative

23 KDA Reactive H, 41 KDA Reactive H (IGM) Interpretation IGM positive

For me it's more like a feeling that I am just going to burst--- like every molecule in my body is coming apart.

It's not painful at all--- it's a feeling of body panic. Hard to describe, really. This only happens in the evening when I'm at rest on the couch. So weird.

I always have to get up and walk around--- or scream into a pillow as loud as I can-- until the feeling passes.

Lymster, no problem!! I know exactly what you mean!!! I have to edit out my own posts from time to time. I can get sooo mad at the @#$%$^^!! Docs out there!! WE could do a whole lot better at diagnosing TBI"s than a lot of them!!

You are also right about Lyme messin' around with the adrenals. I have adrenal exhaustion and have to now take meds for it. The adrenals are what controls the "fight or flight" thingy in us. When one has been fighting infections for a long time, the body just keeps on dumping cortisol into our system, thereby exhausting the adrenals. I believe that when we get these feelings like brought up here, it's because of a 'dump' of cortisol.

Neurogurl,
Is the doc that you have the appt with an ID doc then? I do have a handful of links to other places that can give you references if you need them. Just say the word and I'll post them for you!

As for your test results, this is what I found in the "New to Lyme?" thread;
23-25 outer surface protein C (OspC), specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria

So I would say that you need to get in to see a doc!

Hi Neurogurl!
With the shortened time that you have to find a LLMD before you head off to see an ID doc, you should start another thread, with the title saying something to the effect of "Looking for a LLMD in or near___________." Fill in the blank with either the area you live in, or if you don't feel comfortable with that, then put in the nearest 'big city'. That way people can offer up their suggestions from their experiences.

Here are the links I told you about.
For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:[email protected]

You can email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html


Also, would you please email me? I have a name of a doc in RI and want to see if this is the doc you have your appt with. If it is, you will want to stay away from him, as he follows the typical IDSA stance.

Hope this helps!

hi neurogirl. i live on the cape. i would be happy to talk to you, i can steer you to an llmd here and i know of one in NJ and outside boston. i am going to ask one of our moderators about the protocol of direct contact and sharing the name of llmd's.
i will check the forum as soon as i can tomorrow. good luck and i hope i can help you

Hi Neurogurl,

I have had Lyme, Babesiosis co-infection, and Mycoplamsa since 1995.  I wasn't diagnosed until last fall, when an excellent parasitology lab in AZ tested for blood parasites, and found the co-infection.  I did not test positive on the ELISA test, but I remember having the tick on my head for several days.  

Prior to being diagnosed, I had a lot of pain and stiffness in my joints.  I had a blood test done for arthritis, which revealed that I didn't have it.  However, I have noticed that when I eat nightshade vegetables, my eyes burn and my joints hurt.  Nightshade vegetables (white potatoes, tomatoes, all peppers except black pepper, and eggplant) contain solanine.  Solanine is a natural pesticide the plant makes to protect itself.  However, solanine can cause inflammation in people, because it accummulates in the body and can aggrevate the nervous system.  You might want to try cutting nightshades out of your diet for 3 days, then adding them back in.  Monitor your pain after you add them back, and see if they're contributing.  Norman F. Childers in the pioneer in the connection between nightshades and pain.

about 6 years ago, a nutritionist told me I was losing bone (I was in my 20s).  I began taking TerraMin clay for minerals, in addition to drinking raw milk from a farm.  Because my digestive problems had gotten so bad (I have Candida and Leaky Gut--you may want to see if these are the problems you're having), I was not absorbing the minerals correctly. 

A few years ago, I was again exposed to formaldehyde from a guy who was refinishing his floor.  Because of the Mycoplasma, I have developed an extreme sensitivity to formaldehyde (cigarette smoke and chemicals, too).  As a result of this exposure, I was hacking so bad that I broke several ribs.  The ribs took about 6 months to heal, because whenever I would try to sleep on my side or move much, they would re-break. 

In the past month, I attended a health expo where I found a mineral product that actually works for me, because it is absorbed through the skin.  It's called Mother's Dream Come True, and you add it to bath water.  It reduced my pain and strenthened my bones.  I don't know if bath minerals will help you or not.

I'm not going to list my symptoms here, because my list is longer than Cat's on account of the co-infections.  I wish you the best!

  

Email me with your name and phone number and I'll call you. paxvobiscum81(at)yahoo(dot)com