At this point I have severe cardiological problems that are at times life threatening, total neurological decay (I can barely speak/think/write/remember anymore, people think I have Alzheimers or some type of dimentia based on my behavior), crippling fatigue (I leave the bed/room once a week at most), etc.etc.

However, I am unsure as to what is causing this, there are reasons to think I do and do not have Lyme, and I am no longer under the care of a physician as I have lost faith in them (guinea pig type random treatments), and they all tell me different things

Reasons I might have Lyme:
1.Positive PCR (is a false positive possible on a PCR?
2.6 people in the neighborhood I lived in (which is woodland and there are deer next to your window constantly) came down with Lyme disease in one season
3.The level of bodily disfunction/deteroriation for my age seems extreme for CFS, but who knows

Reasons I doubt my Lyme diagnosis (And am wary of possibly unecessary antibiotics)
1. No HERX when I was on the rocephin (I've heard this is a big indicator you don't have Lyme)
2. Don't have the arthritis/tingling/joint pain type symptoms
3. Negative on serum tests, Western Blot, repeat PCR

I'm not looking for someone to affirm that I do have Lyme (in fact if I were to have to bet on it, I'd say I probably don't *say 60/40*, I want a critical and unbiased opinion based on this information, as it seems the board members are more knowledgeable than my doctors

I'm very sorry this is as long as it is, and I thank you so much if you care to read it, but I have been agonizing on whether I have Lyme or not for years now and wondering maybe I should have tried for more than 8 weeks of antibiotics

god bless
hope for a great recovery for all

Best of wishes in your search for information and in your recovery!

I would say you most likely have Babesiosis.[I am not a dr!] This can cause debilitating fatigue, cardio problems, and mental decay as you stated. So can Bartonella, which is another possibility.

Most who do not respond well to antibiotics later find out [once they find a GOOD LLMD] they also had babesiosis, and that was the reason they weren't getting well.

I would strongly suggest you begin your search for an LLMD [Lyme Literate MD] and do so quickly!

As a side note, my cousin was dxd with CFS, and was later found to have Lyme. It is very common for this disease to be misdxd.

Please read as much as possible here and learn all you can in order to arm yourself with information.

Tincup's Links for new members
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Dr. Joseph J. Burrascano's Guidelines http://www.ilads.org/burrascano_1102.htm

Rose's 15 Facts for Newcomers http://flash.lymenet.org/ubb/Forum1/HTML/011977.html

Camp A and Camp B http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

Lyme and coinfection photos http://lymephotos.com/

Abbreviations for Lyme-speak
http://flash.lymenet.org/ubb/Forum1/HTML/020494.html

Making the most of your LLMD visit
http://flash.lymenet.org/ubb/Forum1/HTML/020605.html

Success Stories http://flash.lymenet.org/ubb/Forum1/HTML/022173.html

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

More info: http://www.ilads.org/

Breakthroughs in Lyme Disease http://flash.lymenet.org/ubb/Forum1/HTML/024093.html

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oops!
Lymetutu

Welcome to LymeNet.

I'm so sorry you have been so sick. I would find a LLMD, Lyme Literate Medical Doctor and have a proper evaluation done..asap. These doctors really understand tick borne illness, and know how to treat them.

You said,
1.Positive PCR (is a false positive possible on a PCR?

I have never heard of a false positive on a PCR. A positive PCR means you have the DNA of the Bb bacteria in your blood/urine..etc.

You said,
Reasons I doubt my Lyme diagnosis (And am wary of possibly unecessary antibiotics)
1. No HERX when I was on the rocephin (I've heard this is a big indicator you don't have Lyme)
2. Don't have the arthritis/tingling/joint pain type symptoms
3. Negative on serum tests, Western Blot, repeat PCR

1.There are people who do not herx at all and some that do mildly, this is not an indication that you do not have a lyme infection.

2. Many people also do not have any joint pain.

3. The tests are not 100% accurate, and LLMDs use different labs that test more bands for the WB.

I have been in treatment for over two years and I feel better than I have in a very long time. Lyme is a treatable disease, so there is hope out there. Don't loose yours.

You can post in the seeking a doctor section of LymeNet and someone will help you with a referral. ( if they don't help here first)

I too was very sick and missed several months of school, I however got better and fully recovered in about 4 years with no treatment.
It was not Lyme, it was babesia.

PCR can be false positive if the lab is not kept extremely clean and has a very good hadling protcol. This can happen because of the extreme sensitivity of the process and just incorrectly processing the controls can cross contaminate and give a positive.

In all the tests did anyone give a a list of possible diseases? and on what basis.

I am certainly not an expert but based on what you have said, if you have Lyme it is an atypical form due to the lack of response to IV. This would put it lower on a list of differentials, perhaps as lower than 10% given the other possible diseases that can cause these types of problems. it would of course be higher on the list if the other diseases have been ruled out.

You metioned deficits in the SPECT, what were they?

Did you do any other tests imaging or otherwise?

Who read the films? Do you have copies?

Did you "fire" the Dr's or can you go back to any of them if you need to?

Can you get the various reports and films?

Maybe the collective experiences of everyone here can help you. Let us know on the above.

Sorry to hear you feel like slyme...

I do hope you are on the road to recovery soon. We will all try to help.

You said..

"... I want a critical and unbiased opinion based on this information.."

Hmmmm... critical AND unbiased?

That is a tuff one.... but I'll take a stab at it.

I think the doctors you have seen are nuts and you probably have Lyme and/or co-infections.

Reasons for my opinions:

1. The doctors near you suck... worse than the ticks! They wouldn't know Lyme if it bit them on the butt. They are famous for being kook-koo birds... premier DUCKS!

2. This misdiagnosis you are facing.. and/or no diagnosis is typical of what happens to folks around your area. Funny they don't think it is Lyme.. but have no clue what it is or how to treat it.. all the while you get worse.

3. Your treatment protocol and testing lacked a lot. Obviously you know a lot about Lyme.. so I think you can figure that one out.. or have already.

You said...

"Reasons I doubt my Lyme diagnosis (And am wary of possibly unecessary antibiotics)

1. No HERX when I was on the rocephin (I've heard this is a big indicator you don't have Lyme)"

If the Rocephin didn't work... you won't herx. It doesn't work in MANY folks.. and for some reason... MANY of them in YOUR area. If you are stil sick.. or have gotten worse.. it is another indication Rocephin didn't work.

Whoever said no herx equals no Lyme is badly mistaken.

You said..

"2. Don't have the arthritis/tingling/joint pain type symptoms"

Please feel lucky that you don't!

These may appear later.. or not at all. Lyme can attack any part of the body. One woman I know has NO symptoms except a thumb that hurts. Another one has no symptoms except loss of hearing and fatigue.

NOT having a few of hundreds of possible symptoms does not rule out Lyme any more than lack of a tree on December 25 rules out Christmas.

You said...

"3. Negative on serum tests, Western Blot, repeat PCR"

After taking antibiotics.. that is VERY common with many tests for Lyme. Before taking antibiotics it is also common. The new ILADS guidelines state...

""Diagnosis of Lyme Disease by two-tier confirmation fails to detect up to 90 percent of cases and does not distinguish between acute, chronic, or resolved infection."

Suggestion-

Get to a LLMD while you are still able.

Jump off the duck merry-go-round.

Let us know how we can help you.

WE care.. and we have been in your shoes... and we are here to help.

And we are free!

However, if we had chosen to do the Igenex Western Blot, he would have had 2 weeks of Zithromax prior to taking the test to pull the Lyme out of the tissues so it will show up in the blood.

The bottom line is Lyme is a clinical diagnosis usually backed up by tests ordered & interpreted by an LLMD. A really good LLMD will take an extensive history & can examine you and be reasonably sure you have Lyme---- especially if other things have already been ruled out.

Once you locate a good LLMD your life will change & things will start to happen pretty fast.

I also have Lyme & am being treated for Babesia even though my test for Babs was negative. My symptoms show I have Babs. So my LLMD said let's stop spending money on further testing & treat the Babesia.

You might like to go to this website: www:matthewgoss.org/lyme.html

Having any co-infection: Babesia, Erlichiosis or Bartonella can bring your treatment results of Lyme to a halt.

Glad you're on this board. I belive the folks here can really help as much as can be helped.
You do have to weed out some of the seemingly totally contradictory stuff (David1097).
My opinion is that you indeed have lyme that has chosen to give you psychological and cns lung problems for the time being. Hopefully you'll never get the rest a lot of us get.
I say this because I believe I was infected in utero...for most of my life I only had knee problems...flare ups until the ducks treated my (miss diagnosis of ankylosing spondilitis) flare ups with antiinflammatories. This lowered my own immune system until I was surely close to death. This also brought on a whole host of other symptoms because the lowering of my immune system let the lyme bug disseminate further thru my body;cns and brain and heart.
Anyway, be glad you don't have so many symptoms. I don't get a herx much from the ceftriaxone either but do from other abx's. You only get it if it's killing off the bacteria and releasing toxins. The co-infections suggested by my collegues may be interfering with or causing the confusion in your head and in your body.

Your age may be fighting it better also...as younger folks immune systems are better than we 50 and over crowd.

Good luck and God bless......get maybe clyndamycin the next IV abx and see how ya feel...I herxed pretty bad on that one even though I did'nt with ceftriaxone....
Leave it up to your LLMD if you have one...if you don't have one GET ONE.

the zman

Sounds to me like you definitely have lyme and most likely Babesia too... Have you been tested through Igenex labs? They are one of the most reputable ones around... they can test for lyme and all of the co-infections. Someone on the board can send you a list of good lyme literate doctors, which is a must for you.. most doctors know nothing about lyme.. except that 2-4 of antibiotics cure it.. NOT!

I am just trying to be objective here. Lyme is possible but in no way is it certain. My suggestion to to collect all the pertenent data and review it objectively, don't forget, he has already gone through the IV route with no change.. This is odd but appearently does not exclude Lyme in the differential.

Unless you find a good neurologist, there may have been no testing at all and with the serious problems you described, a 100% normal MRI and SPECT would be unusual if it is lyme related. Knowing the type of Spect deficits would help here. Don't forget that there are 2 types of Spect that are normally done. One is profusion, the other is metabolism. They tell different things.

Still a good LLMD would be a very good way to go, not because you HAVE Lyme, but rather to figure out IF you have Lyme. An LLMD by virtue of the complexity of Lyme sees quite a cross section of medical specialities and is a very good resourse, regard of the actual cause. Still the LLMD will want what ever testing has been done to date, including the films so it would be wise to accumulate this stuff now.

I too have doubted and sorta still do doubt that I have Lyme. Even after a positive PCR and positive dot blot (LUAT). I haven't herxed at all. There were no bands whatsoever on the WB not even 41. MRI was normal. Symptoms are constant they don't wax and wane in cycles like they say Lyme symptoms do. I am sticking with the treatment protocol my LLMD has giving me. I have seen improvement in the last year while it might be minor it is evident.