posted
Had my second appt with the LLMD (very well known and recommended, seems like a brilliant doctor)
She said I was "exposed to Lyme" but I couldn't get a clear read on if I *have* Lyme. She told me at the first visit I sounded like CFS (which I was diagnosed with 1 year ago but was hoping that was wrong) and this visit she reiterated that many of my symptoms are CFS and not Lyme. She also told me I had an autoimmune problem where my immune system is attacking my body.
My head is spinning because I still don't feel like I have answers. She did up my oral antibiotic (because I can't get out of bed without antibiotics) and will follow-up with me.
I had a Spect scan done also and there is a "moderate decrease in cerebral cortical perfusion in a heterogeneous pattern"
I thought Lyme was the end all be all and here I sit still sit and not closer to answers/feeling better.
can anyone shed some light for me on what any of this means?
-------------------- Junegal Posts: 18 | From East Coast | Registered: May 2008
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
honestly, i don't know of any LLMD who would tell a patient 'you have CFS and not lyme.' the symptoms are indistinguishable, and CFS is just a catch-all garbage pail diagnosis, a list of symptoms with no known cause.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I have to agree. Are you sure your doctor is an LLMD? I would find another doctor.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I'll be bluntly honest with you. You have an infection of bacterial origin that is Lyme-like, or compatible with the illness, as a consequence of your symptoms.
Therefore, your treatment parameter should be the same. I recommend you run Igenex testing numbers 188 and 189. It will cost you 200 dollars, and it's well worth the money.
Having an answer, is worth that much. (The test isn't perfect, but it'll provide some information in a case like yours)
And tell me who this LLMD is in private. I want to add notes to her name, and find out your overall experience with her. It's important other patients know what to expect when seeing a doctor, especially an LLMD. What would you tell someone who is about to see this current doctor? What should they be aware of? Let me know via PM.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Sounds like it is possible that you are late-stage Neurological Lyme or Toxic Encephalitis (same thing but more easily accepted by non-LLMD types).
I had Igenex testing and was CDC positive even tho I am late-stage because late-stage shows as a prior infection, often.
Igenex tests are covered by Medicare as is the Spect Scan.
I had a Spect Scan and the results were very similar to yours except the report specifically mentioned Lyme and/or other infection or brain damage (safe for the MD and rather vague).
Spect Scan is also covered by Medicare but I had to travel to CA to get it done and then no one else local to me in AZ or at the Cleveland Clinic could give me a second opinion on the Spect Scan results because they never heard of it.
Basically, a Spect Scan is a scan of FUNCTION, not anatomy, is new technology and like the Igenex tests, often controversial.
Think back - do you have the "standard" markers such as joint pain, the rash, remembering a bite, etc etc. if yes, then you prolly have Lyme. Cheers and good luck. *BugBit*
Posts: 116 | From Bisbee, AZ USA | Registered: Sep 2005
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adamm
Unregistered
posted
Exposure to Lyme+Inadequate treatment+CFS (or
pretty much any other disorder with initials, for that matter)+ Bad Spect= Lyme, beyond a shadow of a doubt. The most sensitive tests for the disease still miss over 50% of cases.
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My doctor is absolutely an LLMD. I know, I paid the expensive cost to see her. LOL! Seriously though, 1/2 the people in her waiting room are on the IV treatment, I've spoken to them and met one when I was going for other testing.
She's well known and I do get the impression she is a brilliant doctor. She's taken a lot of time with me to go over my records and run new testing with a fine-tooth comb.
I also know that my body is *never* the norm with anything. I don't have severe pain like many Lymies describe. A little in my hands and feet.
My problem is a severe sore throat and sinus infection, and body exhaustion. Like I can't even walk around in the mall. I have brain fog and don't think well anymore. I've been on antibiotics for 1.5 years on/off begging the other 9 doctors I saw to help me.
She decided to keep the course of antibiotics (as the Lyme treatment) but not go to the IV course, just oral. Perhaps mine isn't as severe as most?
I also have EBV, Parvo and HHV6. I think that is what was making her lean more toward CFS, because they are linked somehow to CFS I believe?
Though she did mention Lyme, just didn't seem to think that was the root of *all* my causes from the impression I got. She said some of my symptoms and problems are Lyme-related, hence the continued antibiotic.
I actually respect her more for looking at the whole picture, rather than just saying "Lyme" and doing massive Lyme protocol just because that is her speciality.
I go back in a few weeks and will try to understand more. I'm just really confused right now but taking the meds she prescribed and hoping for the best.
-------------------- Junegal Posts: 18 | From East Coast | Registered: May 2008
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posted
If this doc is really LL, it would seem surprising that 'chronic fatigue syndrome' should even be mentioned. "Chronic fatigue" is just a "buzzword" for the set of symptoms that lyme produces. There is no "symptom" of 'chronic fatigue syndrome' that Lyme cannot cause!
That being said, it IS true that with life and lyme and such things, you always want to leave the window open on all factors and possibilities.
And a disease like Lyme can trigger lots of "autoimmune" type effects!
Doctors are generally good at "acting brilliant"-- but the result depends on whether they really are...- so for now, at least you have treatment going, so see what happens. But be ready to cut and run if aquatic avarian signs become too evident... DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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Alv
Unregistered
posted
Junegal!
HAve you thought to do a FRY lab test for the "mysterious bug" , BLO/Muco whatever this is.
Is sounds like you have it.The symtoms matches with what my daughter is compleining.
Yes you can have a very high load of it.The more I think of the more I belive I had it for years.She has some joint pains but brain fog and exastion...it looks like lyme but it is not.
My friend has the same symtoms that compalains about her legs and hands...and she does not have lyme but the same patterns as yours.
So you might have that bug .My daughter has Cemichal snsitivities.When she walks in the MALL she hates the smell.So check out as it really looks like LYME and it might not be LYME!
BUt another BUG that causes heavy feelings in the frontal LOBE and tired eyes and causes exhastion and you FEEL so lazy and tired and sensitive to everything.
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posted
Alv, Please tell me more about this mystery bug.
If the Lyme doctor, who many people here see and swear by, and she truly is a Lyme specialist, isn't convinced 100% Lyme, I'd like to investigate other causes.
I've never heard of this bug but I am so tired of being tired and sick all the time. I'm in my late 30s and started to get really frustrated.
I've crossed the t's and dotted the i's here, going from doctor to doctor and seeing a well-known LLMD and still don't feel like I found "the answers"
-------------------- Junegal Posts: 18 | From East Coast | Registered: May 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Well, if she's still treating the Lyme and looking for more, it sounds like you're in good hands.
Whatever you do, don't write it off as being something that can't be cured.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Alv
Unregistered
posted
Topic: To everybody who had a hemobartonella finding in Frylabs
Read the above topic.It seems that is BLO ( actually no body knows yet) and peopel that see Dr F at his LAB have had this bug and just 1 or two bands of LYME but basicly not sick from lyme.
Symtoms are almost the same and he treat them diferently.
Please do as much as you can search on this topic.Type BLO and Mucoplasma and see b/c we have talked to much about it here.
Than you will see why everybody tries to find a treatment for it as No body knows for sure what it is.
Also read the last post ABOUT BARTONELLA or BLO and this will cover how people are treating and what they are using.
These topics have been the longest that people talk about.
I know your frustration.I have that bug and I had it before I got LYME.
Sometims you can have LYME assymtomatic and that other BUG active.Than lyme becames active at some point as it did with me.
You do not want to reach that point.
I just used BIOTENSOR today for MY daughter( do some search here on this forum about it and read ) and saw that for her works 4 HH capsules, 1 mino , 1 azithr and 2 Rifampin.
Also Will verify it with MY LLMD that does use MUscle testing but tomorrow she will get her blood draw and sent to FRY lab for $295 .I will see what comes back even though I KNOW for sure what she has.
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