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» LymeNet Flash » Questions and Discussion » Medical Questions » Finally! I'm officially a member of the club!

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Author Topic: Finally! I'm officially a member of the club!
Bill ATL
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Received the following results from my IgeneX tests (Lyme-specific bands shown)

23-25 kDa ++
31 kDa ++
39 kDa +
41 kDa +

No high-intensity results (would have shown +++), but that makes sense as my symptoms have been mostly mild.

I definately consider this GOOD news, as I will now start orals. I have had/shown symptoms for less than a year, so am hoping to be able to beat this for good!

Tree...I already have your welcome packet...am am working my way through it! )

Another test came back as well: Anti-Gastric Parietal Cell Antibodies: 47.8 H+
Notes state that this is indicative of Anemia. Anyone have this issue? It makes sense also with my current and historical digestive issues.

Looked up online (Tom Delay must hate me) and it notes lack of B12 uptake/deficiency. I have seen that Lyme feeds-on/uses this. Anyone have anemia issues?

Thanks in advance for you feedback!


Posts: 80 | From ATLantic Seaboard | Registered: Aug 2005  |  IP: Logged | Report this post to a Moderator
Linda LD
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Bill,

Who do you see in Atlanta?

My sister-in-law sees some fellow and he uses all natural stuff. At the moment she is not the sharpest crayon in the box and I can't get a feel for what he is actually doing...

So do you think this is STARI/Maaster's?

My doc thinks STARI/Master's has milder symptoms that take longer to come on and takes longer to get rid of.

Thanks,
L


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janet thomas
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People are banging on the doors to join our Lyme club. Trouble is, when you want to leave the club it's not so easy. Welcome.

What is your treatment?

Janet


Posts: 2001 | From NJ | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
lla2
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the strength of hte +'s of the bands has nothing to do with how sick you are....some of hte sickest people have only one + or none at all because their immune system is so weak they can't produce any antibodies...that's all it is...

I'm sorry to hear you're part of our club..it's not a fun club to be part of...

Lisa


Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002  |  IP: Logged | Report this post to a Moderator
lou
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Your vitamin B problems seem to be common in lyme. If you read Dr. B's guidelines, you will see that he suggests taking a B complex supplement, along with magnesium, and others.

I was tested and found to be deficient in B5 even though I was already taking a multivitamin AND a B complex supplement. The B12 level was OK in the testing.

So, this is something you could consider doing even if your doc doesn't jump on it right away.


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cbb
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Hi Bill,
Glad you had IGeneX run the test.

Did your dr check for any Co-Infections?

The reason I ask, is that anemia can also be caused by Babesiosis.
Symptoms are pretty much the same as for Lyme so it's difficult to know what is causing the problems.

All of my symptoms have been relatively mild, so for a long time, I've thought we have a milder strain of Lyme bacteria in the South.

I think the same could be true of Babesia.
I was surprised when Bowen found I was positive for Lyme AND Babesiosis.

Previous tests for Babs were negative at labs specializing in Tick-Borne Diseases. (BBI in CT in the early '90s & MDL in the late '90s)

A major symptom of Babs is sweats & chills. In my case, I felt too warm or too cool - never the extremes.
Other symptoms could have been Lyme or Babs.

TBDs are so complex.


Posts: 4638 | From South Carolina | Registered: Mar 2001  |  IP: Logged | Report this post to a Moderator
Bill ATL
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Thanks for your replies everyone...and let me clarify...I'm not happy that we are in this club...I am happy that all of my suspicions were proven true by the IGeneX result. Since receiving them, I have been replaying in my head, the standard lines that I've heard from my local doctors:

``Doctor's comment'' (my symptom)

``It's Stress'' (Headaches)...''It's probably your workplace environment'' (Spinal pain/Carpel Tunnel/vision)...''Possible Ulcer'' ``Acid Re-Flux'' (Digestive issues)...''Pinched Nerve'' (Spinal Pain/Sciatica)...''Epididymitis'' (Testicular Ache)...''Possible Auto-Immune'' (occasional face reddening). ``It's just a headache'' (Encephalitis/migraine) Etc. etc.

Half of me wants to send a SCATHING email to them...or something along the lines of advice NEVER to rule out a Lyme type of bacteria, as a couple did.

The one that REALLY burns me is: ``It's not endemic to Georgia!''

My response (to myself of course): ``I got your endemic...RIGHT HERE you $#&*%@& !!!''

*****************
Linda LD...I am actually driving to Dr. J in NC, but am under the care of C.R. Whom I like VERY much and would recommend to anyone.

Ila2......Thx for the clarification on the IGeneX +++'s

Janet......I think I'm on a combo pulse regimen:

Mino/Zithro for 3 weeks, then off 1 week
Mino/Zithro for 3 weeks and add Flagyl for that 3rd week, then off 1 week
Septra/Zithro for 3 weeks and add Flagyl again in the 3rd week, then off.

That's all that's laid out for me currently...will do follow-up appt. that last off week.

Cbb....I am not sure if we'll ever be able to tell if it's STARI/Master's vs Lyme. If we were to base it on region/location and severity of symptoms, then I would agree that it is, or could be STARI. I would like to know though. I'm not happy to hear that STARI takes longer to get rid of! But I'd rather have that, with the mild symptoms than the opposite, like a lot of our northern friends seem to have.

I had titers that showed slight positive for Babs IgG (1:40), and the Ehrlichiosis IgG was right on the borderline of (1:40).

I think the 5 weeks of Doxy I was able to scrounge from my local Drs in Dec/Jan may have helped knock those down a bit.

Thanks again everyone I appreciate your advice and support. I sleep easier at night knowing you all are out there!

[This message has been edited by Bill ATL (edited 02 May 2005).]


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bg
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Bill, welcome to our "glad I know what I correctly have now after all this time" club! Yes, we'd rather not be here...but we do have 24/7 support of those walking n our shoes. Best wishes.

Bettyg, Iowa


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Lymetoo
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quote:
Originally posted by Bill ATL:
I had titers that showed slight positive for Babs IgG (1:40), and the Ehrlichiosis IgG was right on the borderline of (1:40).


Then be sure to be treated for the babs. Mine was borderline too and I herxed from here to Mars and back on the meds! Not sure it's gone even after 4+ yrs of treatment.

------------------
oops!
Lymetutu


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Bill ATL
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LymeToo...

What ABX treat for Babs? Also...I don't see many people mentioning Septra...any one out there with experience?

Also...any feedback on effects of Minocycline/Zith combo so I might know what to expect? I woke up @ 4am and couldn't get back to sleep after taking my first round yesterday. I've actually been getting solid sleep the last few weeks...until last night!

Thx for your replies.


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bpeck
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Hi Bill:

Looks like you're in good hands with the Lymenet crew.

I don't post too much anymore cuz I'm symptom free and pretty busy just living my life.. but I was un diagnosed and sick for years before finding out it was Lyme.

I used Bactrim (same as Septra) after I was over a year into my therapy. I had to work up to certain antibiotics (and combos) because I had neuro Lyme, and alot of eye symptoms and problems.

I was on a Minocycline/Bactrim combo that was very effective, but was pretty hard to handle (I felt crappy when I introduced the bactim) so had to pulse the Bactrim for a while.

Good luck.
Barb


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Corgilla
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Hi Bill,

Whoa Atlanta. I love it down there. Stone Mountain is one of my favorite places.

Babesia is a protazoan (very similar to malaria) and is treated differently than the bacterial infections. There are numerous treatments but the recently agreed upon most effective/least side effects treatment is Mepron (Atavaquone)and Zithromax (or other macrolide). A lot of LLMD's are adding in OTC Artamisinin which is currently being used for Malaria treatment elsewhere.

I too tested borderline for babs one out of 4 times. Once I was treated for it (it takes about 6 months) I have felt SO much better.

Welcome to the club.

Corgilla


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ibrakeforticks
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I think you're fortunate to have joined this club before your symptoms got worse than mild.

Was the test for parietal cells a blood test? (I think I need to check mine...)

The link below is a peripheral neuropathy forum where there are some experts on pernicious anemia and Vitamin B12 and supplementation. I suggest you check out their "useful websites" and join the discussion. If you don't have PN or other neurological damage from B12 deficiency you are lucky. I think they (a woman named Rose is the b12 expert) will tell you to start taking sublingual B12 methylcobalamin tablets (at least 1000 mcg/day), along with a B complex, ASAP to rebuild your stores.
http://brain.hastypastry.net/forums/forumdisplay.php?f=206


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Bill ATL
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Corgilla...I'll have to ask about the Mepron.

I Brake...the Parietal Cell test was bloodwork ...and I am a member of the Braintalk forum you noted below, with the same screen name. I did start the Metho-B12 back in Nov/Dec. I think that may have minimized my neuro issues...which I had right away with this.

I do think I have a different strain than most. I had neuro issues right away, along with testicular pain, spinal pain in the thoracic area, vision issues, and everything was left-sided. Never had the fatigue, and have not missed a day of work due to it. (Flu, yes...Lyme, no).

Glad to be a part of this group! Going through this alone would not be fun!


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