[fixmymama]

Hi Melody,

I happen to be searching the internet for IGG band connections between the two diseases my mother has. Celiac and Lyme. An old post of yours came up with the Lyme results of Alan. He had two positive bands in the Lyme test. Band 41 is specific for lyme disease. According to the guildlines of the CDC a person has to have 4 or 5 band to be considered positive for lyme. I urge you to contact a lyme lit. MD. or look at Healthboards.com under the Lyme chat room. You may be amazed.

PS. My mother has PN. She has just started her treatment for Lyme and is getting better ... slowly. The swelling in her ancles is gone. She can stand on her own again. She was tested for lyme 3 times and was neg. everytime. I did not believe it and brought her to a doctor that treats on symtoms.

Missy

[MelodyL]

Hi. I was amazed at your post.

What exactly should Alan do at his next doctor appointment. Get a specific test for lyme. I'm sure he doesn't know what to ask for. He did get a spinal tap, they found protein in his spinal fluid, he is on IVIG and his balance is much better.

What exactly is the treatment for lyme disease.
And how on earth can Alan have ever contracted Lyme Disease. He has never been in the grass, he does not go out on walks, nothing like that.

He's been diagnosed with CIDP which is a variant of Guilliam Barre (which is Mother had)

Do you think he has had a mis-diagnosis of lyme disease??

my goodness.

Melody

P.S. Alan's neuropathy got way better after he was seen by Dr. Theirl, a chiropractor/neurologist. He walked in with a fentanyl pain patch, weighing 267 and was all arthritis and stiff. Months later, he was off the patch, lost tons of weight and joined a gym. He stands up and walks fine. Never had a problem.

Can you re-direct me to my previous post about Alan's test? I'd like to print it out. Thanks

[fixmymama]

I copied your post from before below the band definitions. My mom saw improvment when she was on IVIG. But It was a one time shot. It is very expencive and the insurance would not go for it. In other words it did not cure her overnight, so the treatment was taken off the table. Also, there was relief of pain during a steriod treatment. But steriods weaken you immune systme and allow the lyme and its co-inflections to multiple. If he is doing well maybe this is not for you. I wrote after looking at dec. of 2006 post. If you go to the site I mentioned before, there are some very good people that can be far more informative than I. "Ticker" Is one of the most informed.
Lyme is very tricky it can pose as other diseases. Most people do not remember a tick bite or the rash around it. It is believed to be sexually transmittable. It is a cousin of syphilis. It is not checked for in blood donations.

This may or may not help. I hope it does. This is the first help for my mother in 5 years. Good luck to you.

Missy

Below is the breakdown of the Western Blot. The IgM tests for a more recent infection and the IgG a longer standing one.

9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; 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
45 cross-reactive for all Borellia (sometimes people with Lyme who have
this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients

Band 41 is often the first to show, and his are positive. Bands 31, 34, and 39are Lyme specific bands and his are either postive of IND


MelodyL12-27-2006, 09:26 PM
Hi.

Today we went to see Dr. Fred to discuss the blood test results.

FYI …. Dr. Fred determined from these tests that Alan does not have anything auto immune going on. He said “Alan, I have another patient similar to you, with PN and he has spinal stenosis JUST LIKE YOU HAVE SPINAL STENOSIS.” “This guy has been through everything you have been through and has had all the tests”. The guy lives on neurontin and lyrica.”

It is Dr. Fred’s official opinion from looking at the results of all these tests, that Alan’s spinal stenosis is the cause of his PN. He says he has a surgeon who can help him but we have to correlate all this with Dr. Goldfarb (Alan’s new neurologist from the PN Dept at Methodist). Dr. Fred says to show her all these tests and see what she says and then they will all get together to discuss this and see how we shall proceed. I told Dr. Fred that Dr. Goldfarb said to Alan “Alan, if we find that this is not auto-immune, I know a back specialist that will help you. So maybe there might be help for him yet!!!!

See why we love Dr. Fred??.

I am being very thorough and putting ALL THE TESTS RESULTS HERE. I don’t expect any miracles but if anybody has the time to take a look, please do.
Thanks everybody!!!!

-------------------------------------------------------------------------

Glucose Tolerance One Hour test - 137 Reference is 70-200

His regular blood test page (the one with CBC and TSH and T4. Free, T3, Total Ferritin, the whole page was fine. Nothing kicked out as abnormal.

His Cryoglobulen,QL W?Rx Cryoglobuin, QL - Negative

His COMP METAB PANEL W/EGFR GLUCOSE - 82

His TIBC was 221 Reference is 250 – 400


FOLATE, SERUM ……15.7 Reference Range >5 .4 ng/mL

PSA, TOTAL …….2.16


ANA SCREEN, EIA W/REFL IFA
ANTI-NUCLEAR AB ……………Negative

TISSUE TRANSGLUTAM AB IGA…..<3 Reference Range <5 U/mL
Interpretation : Negative (I gather this means no celiac disease)

ANCA VASCULITIDES
MYELOPEROXIDASE AB <6 Reference Range <6 U/mL
Interpretation: Negative

PROTEINASE – 3 AB <6 Reference Range <6 U/mL
Interpretation: Negative

SJOGRENS SSA
SS-A AB <or=1.00 Reference Range <or=1.00 INDEX
Interpretation Negative Negative
Antibodies to SSA (RO) and SSB (LA) are
Observed with the highest frequency in
Sjogren’s syndrome, although these
Antibodies are also found in a significant
Percentage of patients with SLE.





SJOGRENS SSB
SS-B AB … .<or=1.00 Reference Range <or=1.00 INDEX
Interpretation - negative Negative

Antibodies to SSA (RO) and SSB (LA) are
Observed with the highest frequency in
Sjogren’s syndrome, although these
Antibodies are also found in a significant
Percentage of patients with SLE.


RHEUMATOID FACTOR <7 Reference Range <14 IU/mL
(Dr said that he does not have Rheumatoid Arthritis)


C-REACTIVE PROTEIN 2.3 H Ref Range <0.8 mg/dL
SM, AB, EIA ……..…NEGATIVE

RPR W/TITER & CONF RFX
RPR SCREEN - Nonreactive

LYME DISEASE IGG, IGM, WB
LYME DISEASE IGG, WB
LYME DISEASE INTERP (IGG) …..NEGATIVE

18 KD (IGG) BAND Nonreactive
23 KD (IGG) BAND Nonreactive
28 KD (IGG) BAND Nonreactive
30 KD (IGG) BAND Nonreactive
39 KD (IGG) BAND Nonreactive
41 KD (IGG) BAND Reactive
45 KD (IGG) BAND Nonreactive
58 KD (IGG) BAND Nonreactive
66 KD (IGG) BAND Reactive
93 KD (IGG) BAND Nonreactive

IgG Western Blots which have 5 (or more) of the 10
Significant bands are considered positive for specific
Antibody to B. burgdorferi. (Proceedings of the 2nd Conf. On
Lyme Disease, Dearborn, MI 1994.)

LYME DISEASE (IGM). WB
LYME DISESE INTERP (IGM) Negative

23 KD (IGM) BAND Nonreactive
39 KD (IGM) BAND Nonreactive
41 KD (IGM) BAND Nonreactive

IgM Western Blots which have 2 (or more) of the 3
Significant bands re considered positive for specific
Antibody to B. burgdorferi. (Proceeding of the 2nd Conf. On
Lyme Disease, Dearborn MI. 1994.)

DNA (DS) ABS <30 Negative

ANGIOTENSIN CONV ENZYME 52
PM – SCL AB see note Negative
PRELIMINARY REPORT -
This test is delayed because reagents re unavailable from the manufacturer.
Results are expected by 12-28-06. This test was developed and its performance
Characteristics determined by Quest Diagnostics Nichols Institute. It has not
Been cleared or approved by the U.S. FOOD AND DRUG Administration. The
FDA has determined that such clearance or approval is not necessary.
Performance characteristics refer to the analytical performance of the test.

Test performed by:
Quest Diagnostics Nichols Institute
33608 Ortega Highway
San Juan Capistrano, California 92690

End of Report





--------------------------------------------------------------------------------

glenntaj12-28-2006, 06:06 AM
The only thing out of range was the c-reactive protein number--and that might be expected in someone like Alan who has had heart issues in the past. (CRP is a sensitive, though not very specific, marker of inflammatory processes). It might be a good idea to see if that could be reduced a bit through diet. (I'm sure Mrs. D will have some suggestions, as well as some info on possible med interactions.)

What I've always wondered about Alan--and I believe I wrote about this on the old BT before--is whether his neuropathic symptoms may not only involve spinal stenosis working on his spinal cord but whether he may have some nerve root issues in his lower spine (the lumbosacral plexus, where the spinal cord seperates into a number of nerve trunks). Lumbar spine/nerve root issues (the area is called the cuada equina--literally the "horse's tail", as that's what it looks like--Liza Jane can tell you a lot about this area) are VERY common in older people who have done considerable physical work in their lives. Am I correct in assuming he does not have symptoms in his hands, but only his lower body? And, forgive me if I've forgotten this, but has he had full spinal MRI's recently?

--------------------------------------------------------------------------------

MelodyL12-28-2006, 07:48 AM
As far as Alan ever doing physical work in his life, let me put it this way. He sat on the couch during our marriage.

When he went to work, he carried a big bag full of supboenas. Now THAT migh have thrown his back out. But he rarely complained of back pain.

He did however break two or three seats in the cars he had at the time. The seats were always turned to a funny direction. He did this in all the car seats. Never could understand why, but that's how he drove.

Yesterday Dr. Fred did say (about the pn in his toes), Well, Alan might have some fibromyalgia going on".

And as far as the C-reactive protein thing, and his diet, This man eats only veggies, fiber, whey shakes, salads, nothing with sugar or salt.

So I have no idea what could be taken out of or added to his diet.

And his had a recent MRI last month right before we went to see Dr. Elowitz, the neurosurgeon who put his films on the wall and said "Oh, I see significant spinal stenosis but I cannot operate".

So how come some people CAN operate and others CAN'T.

Maybe it's in a place where they figure they might nick a nerve or something??

Melody

[MelodyL]

Missy:

Wow, talk about being thorough. I see where you are referring to Alan's being Reactive at 41 and Reactive at 66. I remember questioning this (I question everything when it comes to his blood tests),and being told that Alan was negative for Lyme Disease.

Now what this means, I am completely clueless.

Alan has been on IVIG since January, starting with two times a month, then he improved so much, his doctor put him on once a month.

What helped Alan's pain between his toes (that is the only place he has PN), is we put cotton balls (or sponges initially, cut to fit) between his toes which separated them and reduced compression. His toes are all squished together. The separating of the toes help dramatically with the PN and when he walks or is active, there is no pain whatsoever. Only when he lies down and doesn't put cotton balls or anything to separate his toes, only then, does he have pain.

So exactly what treatment is your mother on that helps her? Maybe I missed it in your post.

Thanks much for being so thorough.

Melody

ANYBODY HAVE A CLUE, jump on board!!!!

[fixmymama]

The treatment is long term antibiotics (6 months to 1 1/2 years) sometimes longer. She has only been on meds. for 5 weeks now. My dad does not have PN but was the one that had the visible bull’s eye rash from the tick. He too is on antibiotics. He is on penicillin; mom is allergic to it so she is on dyoxycycline (and a couple of others). The spelling is most likely off. I am a science geek and don't have much aptitude toward word art. People with chronic lyme may end up with a PICC line. This is tube in you arm to shoot the antibiotics directly into your blood stream. This is the next step for my mom. I am taking my parents to the llMD in Wisconsin on Thursday for a follow up.

There is two camps of beliefe on the chronic lyme front. That is part of the reason to see a llMD. Others my blow it off. Like saying that Alan was Lyme neg. because he did not have enough of the band reactive.

I copied one of "Tickers" symptom lists. Lots of "lymies" are thought to be hypochondriacs because of all the stuff that goes wrong with them.

Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

When Lyme disease is a possibility, it is very important to see a kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease
(2nd edition)" by Karen Vanderhoof-Forschner.

I have these and they are great.

I know this is a lot of info..... Hope is useful to you.

Missy

[MelodyL]

Hi Missy:

I can tell you right off the bat, that last year (after Alan had a stent put in his chest because of a blockage) and then he went to cardio rehab...the man joined a gym, and was in the best shape of his life.

He had not one sympton on that chart. And the exercise took away his PN or greatly reduced it. The reason he had to stop was because he went on the treadmill, he got a foot ulcer and it became infected. He couldn't go to the gym, and was back and forth at the podiatrist for 18 months. He didn't put on any weight thank god because of the way we eat at our home but he did lose some muscle tone.

He went to a wound treatment guy, was given a Walker shoe boot thing and regranex for the ulcerl. It has now completely healed. He is back working part time. And we use cotton balls between his toes.

He has never, ever had any bullseye rash (I know what that is).

So (and I'm no expert), but I really don't think that Lyme is playing any role in Alan's life because if it did, how could this man have ever gone to a gym and built up his body and felt as good as he did (until he got the ulcer).

What really makes him feel like a million dollars is when I give him my massages. The PN goes away completely. He uses a device called a theraspa on his legs and calves. It brings the blood flow right to his feet. He loves this.

So if anybody thinks we should pursue this Lyme thing. And how does one pursue this anyway. Who do we ask about this??

Honestly, I don't think this applies to Alan.

Missy, I do thank you though.

Melody

[tangye5]

Please have Allan tested by IGENEX Lab and then say you don't think he has Lyme!!

[MelodyL]

How exactly am I supposed to have Alan tested by IGENEX Lab??

Oh, Alan has an appointment with his neuro next week. I might not be going with him. I have just printed out the lab results that you posted.

What exactly should be said to the neuro so we can get her to order this IGENEX lab thing??

I want to know how to word this. I will type it out. I really don't know what to ask for. I just can't show her these tests and then go "give him a lyme disease test".

I want to explore every avenue here (but honestly, given his compressed toes and how, when we spread out the toes with the cotton balls, the pain goes away), so I really don't see how lyme disease is going on here. What are you seeing that I am not seeing!!!
Thanks, Melody

[Marlene]

Hi Melody,

This post is timely for us also. John did have testing for lymes and showed positive in two bands. Does that mean he has lymes? Not always. The doctor has to take into account all the symptoms, your risk of exposure, your medical history, etc.

Positive results can be due to cross-reacting antibodies from other spirochetal diseases or from autoimmune diseases. In John's case, he has had numerous blood transfusion which increases his potential to have a cross reacting anti-body. All of his blood product were leukocyte reduced/filtered and irradiated to greatly reduce exposure to stuff. And his original problem was autoimmune in nature. Testing lymes is not black and white. There are two schools of thought...one is that Lymes is underdiagnosed and treated; and the other is that it overdiagnosed and treated. And, what lab you use seems to play a role in this also.

IGENX is the lab we used. But you cannot diagnose based soley on the lab result. And the doctors are all over the map on how to test and diagnose Lymes.

This is all pretty knew to us and I do not fully understand this stuff yet. John has a very low risk of contracting lymes....no pets, can't do yard work, we don't spend a lot time outdoors in the woods. The problem is that the symptom for lyme are also the symptoms for many diseases. I feel that we can show an causal relationship between his symptoms and his treatment for SAA fairly easily. Prior to John getting ill, he had no bug bites or flu like symptoms. It's a conundrum. I'm not sure what we are going to do with this info. His doc is doing some further checking but we are not yet convinced that Lymes is his problem.

Don't know if this helps any....

Marlene

[MelodyL]

Hi Marlene:

I have no idea if this helps or not, because I am still completely clueless.
We've been on a journey to find out why he has neuropathy for 18 years.

Then finally, a neuro does a spinal tap and finds protein and he gets IVIG, then his balance improves.

Also, if you trace where my husband was 5 years ago, in the pain department and everything else, well he went from using a 125 of the fentanyl patch to not needing anything and becoming a body builder. Does this sound like a person with Lyme disease? I have no idea.

The only reason he can't go to the gym is because of re-curring foot ulcer (which was healed but which he re-injured by staying 8 hours on his foot all day on Monday....not to smart there was he??). But he has a deformity of the bone underneath the ulcer (this was diagnosed by his podiatrist). That's why the ulcer will heal just fine, but if he walks TOO TOO MUCH, it will come back. The only treatment that will prevent this re-curring, is to have an operation on the bone and reposition the bones or remove a bone, or something to that effect, but his podiatrist (at least the first one), woudn't do it because of his neuropathy and because they said "It will affect the big toe and you might lose your balance, and you don't want that, too many complications". So what is a person who is otherwise fit and fine, but who has neuropathy, and because of the neuropathy, had a foot ulcer, and the foot ulcer heals for a bit, but then if he walks too much, the foot ulcer comes back. So he wears a shoe boot thing that allows him to walk just fine.

I asked a podiatrist "why can't he just wear the shoe boot thing for the rest of his life, or even buy one of the shorter shoe boot things that go up to his ankle.??" It takes the pressure off and well, why can't he just wear it when he has to go somewhere???" I asked the podiatrist this and he said "No, it doesn't work like that, you can't wear the cam walker for the rest of your life". I said 'why not, is there a rule or something, I just dont' get it". and I was told "you can't wear this cam walker for the rest of your life, it doesn't work that way".

So what the heck is Alan supposed to do. No one wants to operate on the foot ulcer. (the bone thing). If they can re-position the underlying bone, and it won't affect his big toe, he won't get the ulcer back. That is what we have been told.

We are yet again, in touch with a new (in NYC) podiatrist who is yet again, another state of the art specialist. Alan feels that if they take care of his tailor bunion, his 3 compressed toes will straighten out and the neuropathy will be greatly alleviated.

See, we know what we want done, but they won't do it. Maybe it's an insurane thing, I have no idea.

I have just sent an e-mail to a podiatrist in NYC (this has nothing to do with cryosurgery by the way), it's was just an e-mail stating all our questions and if they take Alan's insurance, well, would they consider doing the tailor bunion.

I don't even want to ask them about the foot ulcer underlying bone thing yet.

Let's just get our foot in the door first.

So this wednesday he goes to Methodist and we'll see how the ulcer is doing.

Maybe this guy will consider operating. But if he doesn't we have to have options here. Alan's ulcer is not getting better. It's 18 months already.

Thank goodness he doesn't need referrals on his insurance.

We won't do anything until we hear from the guy at Methodist "no, I can't operate on his foot ulcer underlying problem". If this is the case, then we will go to the guy in NYC and get yet another opinion.

Opinions, opinions, that's all we seem to be doing lately.