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» LymeNet Flash » Questions and Discussion » Medical Questions » Am I Craaazzy?

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Author Topic: Am I Craaazzy?
Sojourner
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Seriously! If anyone thinks I am tell me. I can take it.

Quick background.......We are originally from SE Pa

My husband is MS dx---treating lyme and co's getting better. Feels better, MRI's better-the whole kit and kaboodle. Sees Dr. P in Ct

Youngest Daughter (now 10)had a weird summer illness (fever,etc--before we knew about lyme). Year later she had strange neuro symptoms-lhermitte's, light sensitive, shocky feelings in limbs, etc. We treated her with Dr. M in Wis---symptoms resolved and we just monitor her now.

Oldest daughter 16---personality changes, OCD, Panic attacks--on her way to a bi-polar like dx and suddenly she spoke about all these neuro things--shocks, hot water feeling down her leg, tightening of muscles. We took her to Dr. S in Bucks County Pa. She has lyme and bart....treating now with Dr P. and things are very difficult.

That leaves our 14 yr old son and me. And this is the "am I crazy" part.

Our son had sudden unilateral hearing loss at around age 7 when we lived in Pa. It was discovered through a school screening. He had no language delay and this was his second school screening (the first two years earlier) so we knew it happened in a certain time period. He had the chicken pox during the time so the docs thought maybe that was the cause....which it could be. He has no other symptoms.

Over the last two years I have developed a constantly sore lower back. Hurts when I sleep, worse some days than others, sometimes it goes away for short periods. I had a bout of tennis elbow which went away and then showed up in the other arm. Recently had sciatica for about a month. I currently have unexplained lower calf pain which caused me to limp.....it went away and now is back less severely. I get headaches periodically--everyday and then none for awhile. In the morning I walk like an 80 yr old lady because of stiffness and pain.

Now, if I knew nothing about lyme---I would surely write all of this off. I am not a sick person and none of my ailments are debilitating... I fully understand how sick lyme can make one and I certainly am not sick like that. Neither is our son.

On the other hand, I don't want to overlook something obvious especially for my son.

I have an ENT appt set for my son where I hope to have him authorize an Igenex for him.

I had my OB/GYN sign one for me...

IGM
41 IND
83-93 IND

IGG
31 IND
39 IND
41 ++

Am I a crazy caregiver who now sees lyme in myself? Should I just take care of my three lymies and shut up?

And for the poor soul ( yes, I mean one--geez even I don't want to read all my drivel) who might have made it to the end. Thank you! Lymenet has kept me sane for two years--up to now anyway.

Posts: 554 | From Naples, Italy | Registered: Jun 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
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You can't ignore those IND's! If you really need convincing, take doxy for 3 weeks, go off abx for 2wks, then test again.

I'd bet those IND's will convert to +'s!

NOPE...not nuts!! Not crazy either!!

Western Blot explanation:
http://tinyurl.com/ffn3x

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95670 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Michelle M
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Well, you sound perfectly sane to ME!!!

That IgG sure looks fishy to me.

Combined with your symptoms are prior exposure (not to mention your family's exposure), I imagine an LLMD would want to do an abx challenge -- coupla weeks of doxy, then stop, then re-test, and see what the results looked like then.

No one can diagnose you over the internet, of course.

But there ARE entire families afflicted with lyme.

Yours sure might be one.

I'd be making an appointment.

How 'bout a family discount???

[Wink]

Michelle

Posts: 3193 | From Northern California | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
tailz
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I have Lyme and babs so far, and I also have had severe OCD for most of my life. It really picked up speed in 1985 or 1986 - right around the time cell phones came on the scene, and accelerated every year after, right along with the techno boom, until I collapsed from exhaustion in 2000 (right around the time everybody and their dog had a cell phone).

The reason I mention this is because this past summer I planted some shrubs and mulched a little. I won't get too detailed, but my mulching 'rituals' were worse on one side of the house than the other. I had been blaming it on the sun, except I was even worse in my neighbor's yard - I could not focus or 'remember' steps to my mulching routine at all in her yard. I also almost collapsed outside her kitchen last year.

Well, my ex-husband bought me a gaussmeter that measures electromagnetic fields, and the EMR was higher on the side of the house that I'd been more OCD on. My neighbor's yard was way higher still.

I really think this would explain why some days you are better than others:

http://www.cassmd.com/microwave.html

I was lucky enough to have a neighbor move in next to me who smokes on his deck, so I can also see when he makes calls on his cell phone, some of the time at least. Every time he does, my Lyme symptoms increase in magnitude. My house is located between his house and the tower, so the microwaves have to travel through me to reach his phone. This is why Fridays and Saturdays are often my most painful days, and then usually it quiets down at least a little while on Sundays. Summers are murder for me.

Here is a link to find out how close you are to a cell phone tower, though it is pretty meaningless, because all you need is one beamed at your home:

www.antennasearch.com

I don't think you are crazy at all. I would, however, recommend you remove cell phones from your home (and cordless phones). If your son uses one, I think this would explain his hearing problems, too.

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Lymetoo
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Let's just ban and burn all phones. That will fix all of our troubles.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95670 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Read the link I gave. It's Dr C's protocol. I'd have to look, but I think he says take 500mg a day.

It kills off spirochetes, thereby causing more dead "body parts" to be able to cause the antibodies to show up. [layman's terms! [Big Grin] ]

It would not be a false positive.

Here it is:

"Instead of ignoring these, they should be a red flag to keep pursuing a laboratory diagnosis. Giving patients 4 weeks of antibiotics (usually tetracycline, 500 mg, 3 times a day), will convert a negative or equivocal Western blot to positive in about 36% of cases." [from the link above]

I don't know why he says tetracycline, instead of doxy...but I'm sure either would work. They are kissing cousins.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95670 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Also from the link:


"Western blots look for antibodies. These antibodies are made by your immune system. In this case, the antibodies are made to fight against different parts of the Lyme bacteria, which is called Borrelia burgdorferi, and other Borrelia species.

In other words, your immune system does not make one big antibody against the whole bacteria. So, when you see a number on a borreliosis Western blot, it corresponds to a specific part of the bacteria.

Compare it to the old story of different blind people touching an elephant. Based on the part of the elephant each one touched, each person had their own perception. Likewise, the antibodies attach to different and specific parts of Borrelia burgdorferi.

Numbers on Western blots correspond to weights. Kilodaltons (kDa) are the units used for these microscopic weights. Think of it like pounds or ounces. An 18 kDa antibody weighs 18 kilodaltons.

To do a Western blot, thin gel strips are impregnated with the various parts of Borrelia burgdorferi. Each of the numbers, 18 through 93, on the test result form, is a part of the bacteria.

Blood is made up of red blood cells and serum; Spinning blood in a centrifuge separates serum from red blood cells and other things, like white blood cells and platelets.

Serum contains antibodies made by the immune system. Electricity is used to push the serum through the thin gel strips for the Western blot.

If there are any antibodies against parts of Borrelia burgdorferi present in your serum, and these parts are impregnated on the strip, the antibody will complex (bind) to that part.

When antibodies form a complex, it is called an antigen-antibody complex. Anything foreign in the body is an antigen, such as a ragweed pollen particle, germ, cancer, and even a splinter.

In the case of borreliosis, the various parts of Borrelia burgdorferi are all antigens. Though each antigen is different, they all come from the same bacteria. So all the numbers that are positive on the test report are due to antigen-antibody complexes.

If enough of the complexes are formed, eventually it may be seen with the naked eye as a dark band. - Band intensity reflects how dark or wide it is. Controversy exists about band intensity.

Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.

The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track.


Instead of ignoring these, they should be a red flag to keep pursuing a laboratory diagnosis.....
What may happen when patients are given 4 weeks of tetracycline (or other antibiotics) is that some of the bacteria die. When Borrelia burgdorferi dies, it is less efficient at avoiding the immune system.

That's when antibodies may be formed against Borrelia burgdorferi, converting the negative or equivocal Western blot to positive, in about 36% of cases."

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95670 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
DW213
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I would have Dr. P sign off on an Igenex test. Wouldn't waste my time with other docs or tests!
Posts: 78 | From Rhode Island | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
3greatkids
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Let's just ban and burn all phones. That will fix all of our troubles. ..... LymeToo

You have that right LymeToo!!!!!

The Psychiatrist, down the street from me, has quite a practice because of this!!!!!Cell phones glued to the ears,married to your cell phone.Heck,I tossed hubbies out the window one day.The stinking thing got on my nerves and hubby could not turn it off.....out it went and we had a peaceful weekend!!!!

Anyway,Sojourner,you have knowledge that is very valuable.
You are not crazy....you are INFORMED.

Think of the poor folks,seeking help,going from duck to duck,never knowing they have LYME!!!

Yes,entire families do have Lyme.I know I watch my family and monitor their aches and pains.Now it has turned into the neighborhood.A few friends now sick,going from duck to duck,test after test,no clues.It makes me cry.I try to help and make sure they get are informed about Lyme. So many putting their trust in these ducks and still they suffer.

I hope all of you feel better soon.Your family is lucky to have a smart and caring Mom.

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Lymetoo
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quote:
Originally posted by 3greatkids:
Let's just ban and burn all phones. That will fix all of our troubles. ..... LymeToo

You have that right LymeToo!!!!!

That was definitely a joke!! Guess you had to have "been there!"

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95670 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
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quote:
Originally posted by tailz:
I don't think you are crazy at all. I would, however, recommend you remove cell phones from your home (and cordless phones).



--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95670 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
CaliforniaLyme
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YES YOU ARE CRAZY*)!*)!)!!!!!!!!!!!!!!

If being sane is crazy*)!!!!!!!!!!!!!!!!!!!
Voila*)!*)!! You are sane*)!*)!!
**************************************
1: Presse Med. 2007 Jan;36(1 Pt 1):61-3.

Back pain without radiculitis as an initial manifestation of Lyme disease: two cases

Chanier S, Lauxerois M, Rieu V.
Service de Mdecine, Centre Hospitalier, Thiers. [email protected]

INTRODUCTION: The most frequent neurological expression of Lyme disease (borreliosis) during its secondary phase is meningoradiculitis, but atypical presentations occur. Lyme disease must be considered especially in endemic areas and during the summer (May-October).


CASES: We report cases of two patients with unusual clinical presentations of neuroborreliosis.

Both had acute inflammatory back pain, resistant to the usual analgesic treatment. Both patients responded negatively to questions about tick bites and erythema migrans. Laboratory tests revealed an inflammatory process in only one patient.


Lyme disease was confirmed by lymphocytic meningitis and serological tests positive for Borrelia in blood (both cases) and cerebrospinal fluid (one case). Antibiotic treatment led to the disappearance of pain and the normalization of laboratory tests.


DISCUSSION: Inflammatory back pain, even without radiculitis, may be related to Lyme disease in endemic areas.

PMID: 17261450

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

Posts: 5639 | From Aptos CA USA | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
Sojourner
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Hey all!!!! Thank you so very much. You have healed me mentally and I feel so much better now.

I have made an appt at Dr. M in Wisc. for both my son and I. It's not until Feb. so I'll take my boy to the ENT (he should have his hearing checked anyway) and coerce the doc into an Igenex-I'm quite good at that! then we'll have two WBs to take to our appt.

Thanks again---you are all the BEST [kiss]

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DoctorLuddite
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Have his Vitamin D level tested as well, deficiency can have protean manifestations, many of the symptoms similar to Lyme borreliosis, and it is the most common vitamin deficiency in your part of the country.
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sixgoofykids
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I definately have Lyme, very debilitated from it.

BECAUSE I have it, I could see small symptoms in our daughter who was not ill AT ALL. She tested about like you did.

We've been treating her, and she has had unbelievable improvement! She had some learning difficulties, and they are completely lifting. One of her teachers was trying not to be teary in her recent conference, but it was so hard because it's so great that she's come such a long way in such a short time.

Also her treatment is going so much easier than mine since she was not as sick to begin with.

She is struggling now that they've switched her to doxy .... it's stirring up the bugs in her head ... but overall, it hasn't been too hard for her.

So, you might be crazy, but if you are, it's not because you think you might have Lyme. [Smile]

--------------------
sixgoofykids.blogspot.com

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artraveler
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Hi Sojouner,
I was dxed with only 41 IND!! Although I had many more sx's!! So I wouldn't base whether or not your crazy on that!! You almost would have to be crazy if you didn't ever suspect it!!
Good luck with your appt. Hope it answers the questions you have. [Smile]

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May we all find peace one day and may peace prevail on earth ~ Traveler

Posts: 66 | From traveling the U.S. | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
   

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