my rheumy is trying to confuse me! Or is he right?

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nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 4/8/2010 10:42 AM (GMT -6)   
Which is very easy to do these days..... sad

I saw my rheumy yesterday; I see him because I have been dx with lupus, fibro, and RA. Yes, I realize that Lyme can masquerade as these illnesses, but it can also trigger them. Plus autoimmune diseases are all through my family, especially lupus, and no, we don't ALL have Lyme....we live in different parts of the country and I've never even met half of them! So there is at least some reason to believe that I have both Lyme AND lupus!

I wanted to discuss some recent bloodwork and also the fact that I've been forcibly put on part-time status at work because of my poor job performance of late (mostly due to attendence issues...when I'm really sick, which is most of the time, I can't go in to the office). I am applying for partial short-term disability with the help of the Human Resources people and I needed him to fill out paperwork for that too.

Anyway, it was a long and confusing appt, and frustrating because he wouldn't sign the paperwork and give it back, because he seemed to think I should go on full time disability.

But the REALLY confusing part was when he told me that "when you have lupus, your immune system is in high gear and it's gone haywire. It makes antibodies to anything and everything at random." He was trying to say that the fact that I'm making antibodies to Lyme doesn't mean anything. I could have had the infection many years ago and thrown it off myself, as some people do without antibiotics apparently. Or these antibodies could actually be for something other than Lyme, but they show up on the test as Lyme-specific....I guess that's possible? From what little I know about antibodies, your body can manufacture antibodies that are capable of attacking more than one type of cell, if the surface molecules happen to "fit" the proper configuration just by chance.

Anyway, he asked me if I feel better after being on doxy since January, and I have to say "no, I don't". And I'm on both doxy and zithromax now. I don't feel better. I don't think I'm having "herxes", or if I am I don't recognize them when they occur. I don't have some of the key Lyme disease symptoms, such as aversion to alcohol!

Maybe he's right and I don't have Lyme disease?

I don't know.....I'm just SO confused now. And I can't afford anymore to be shelling out all of this money for doctors and treatments that are not covered by insurance or only partially covered at any rate. I'm really tempted to just stop the antibiotics and all of the herbal supplements and everything.....but I just don't know.
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, Doxycycline, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 4/8/2010 12:23 PM (GMT -6)   
Not everyone with Lyme will have all of the symptoms.

Yes, it is true that antibodies can "fit" multiple substances. However, something had to trigger the creation of those antibodies in the first place...and the more bands on a WesternBlot that are positive, the less likely that the test is a "false positive" in my opinion...

In most autoimmune diseases, one part of the immune system is in overdrive, which tends to suppress other part(s) of the immune system - this has been observed in many different autoimmune conditions. This opens the door for opportunistic infections, and then due to the suppression of the immune system, the symptoms of the infection may not be obvious or as severe. Thus the infection can gain a foot hold and hide in the body, causing various sorts of damage while it flies under the radar of the body's suppressed immune system. Lyme is very good at this...and it will suppress the part of the immune system that attacks lyme if needed...but if a person's immune system is already imbalanced, the lyme may either push the imbalance further, or just "move on in" and quietly do its damage.

Is this making sense? I hope so... It is hard to know when the tests are so inaccurate.

I don't know what to say about the abx not seeming to work for you... For me, the abx do help some, and when I go off of them, I get really sick...so I know they're doing something. So maybe you should consider discussing the abx issue with the doctor who prescribed them for you and see what their input is on the whole thing...

Take care,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


1hunter
Regular Member


Date Joined Oct 2009
Total Posts : 70
   Posted 4/8/2010 1:09 PM (GMT -6)   

Razzle,

Could MS light up Western blot bands?


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 4/8/2010 2:11 PM (GMT -6)   
Thanks Razzle......I really appreciate the reply and the attempt to explain things to me!

The problem is, of course, one that so many of us share...basically I'm just too sick to figure all of this out right now! I'm faced with important decisions every day that I feel too ill to deal with. My judgment has got to be somewhat impaired, right?

I will probably continue with the abx for a while...I'm afraid to stop now and maybe miss out on some real improvements....

Why does everything have to be so complicated!?! sad
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, Doxycycline, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 4/8/2010 4:12 PM (GMT -6)   
1hunter,

I don't know for sure. I do know Lyme can cause brain lesions that look exactly like MS. I think there is some protein that can be checked for in the spinal fluid or something that can rule in/out MS...but I don't know much about all this.

Nasalady,

Judgment & decision making are impaird with Lyme. I struggle with these too. Do you have anybody with whom you can discuss options and all the plusses & minuses of each option? It might help clarify things for you...

Take care,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 4/8/2010 6:09 PM (GMT -6)   
Nasalady,

I share your frustration and confusion regarding diagnosis and treatment. Why do so many of us seem to have lyme plus some other autoimmune disease as well. My biggest fear now is that my lyme if left untreated may trigger something worse. My recent lumbar puncture does indicated MS however, I still show no visible lesions on my MRI's. Tomorrow I see a new LLMD and anticipate getting back to a regement of antibiotics. I have been off the abx since November and have been feeling progressively worse each month.

I had to take a break for a while from all medications, my body is sensitive to meds and I have a hard time determing what is a symptom vs. a side effect from the meds. Are you considering taking a holiday from the abx?

Good luck with the decisions that you are facing.
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Gabapentin, Vitamins B,C & D
 
 


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 4/8/2010 10:46 PM (GMT -6)   
Thanks again for your replies....

Razzle, I am able to discuss things with my husband to a certain extent....sometimes it's hard though. He tries to understand what I'm going through but doesn't really comprehend from personal experience. Of course, this is why I have come to rely on this forum! :-) So many of you DO understand!

betterhealth, I can relate to having to take a "vacation" from meds....I couldn't stop all of my meds, but have thought about taking a break from the Lyme meds just for a little while to see what happens. Both you and Razzle have said that when you do that, you get sicker. If I had the same experience, it would be one confirmation to me that I do really have active Lyme disease.

I'm still thinking about the med "vacation" though....I'm a little scared because I already feel so lousy. How much worse could this make me feel? A lot worse? That would not be good!
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, Doxycycline, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com

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