posted
In February I was diagnosed with chronic sinusitis when my head symptoms first started, put through surgery. I was put on Augmentin then Avelox for a month.
Before this I was completely healthy, however, I volunteered in a yoga studio with high levels of mold and also slept in a room at my parents which had a leak in it.
April-Sept = head pressure, eye floaters, cognitive problems (short ten memory, word search, crawling sensation in skin, many other little things.
Finally found LLMD in Sept. My IGeneX test back in Oct. came back negative for Lyme, but with a 2 positive and many IND bands.
It came back positive >40 for Babesia Duncani.
I also came back positive for IgG Coxsackie, Mycoplasma.
Started on Mepron, Zitho, Doxy, Bactrim.
Then Crypto, artemisinin, and sida acuta added. Samento, banderol, vitamin c, vitamin d, many others.
Blood tests each month have always come back normal.
I had an appointment today. My CD-57 came back at 200!! My doctor said she is absolutely puzzled, and doesnt think Lyme is an issue for me. She thinks its the Babesia, possibly Bartonella, and mold. Now I am being put on cholestrymine.
I honestly dont know what to do anymore. My sinuses constantly feel inflamed, but I have no discharge. There is always a level of pressure in my head. I have had herxes since starting medication, but I dont have any of the classic day sweats, nights sweats, chills, or fever.
Could the antibiotics that I took last spring killed the Lyme, but not the babesia??
And now I have come across this website that lists a whole bunch of other stuff I have never even thought of to test for:
posted
The recent Lyme conference that was broadcasted said that a CD57 can really fluctuate and is not the only tool LLMD's use when treating Lyme.
It is only a guide on how the immune system is doing and that sometimes a sick person can have an elevated CD57 and still be sick. They don't know why that happens yet.
It is only a guide and your LLMD should not be only relying on that test for treatment.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
Thanks for your reply. Now I regret mentioning mold to her. I just hope I didn't steer her in the wrong direction with my theory.
I also read co-infections can cause high cd57's. idk what to do anymore. I started a-bab today and am definitely feeling it, even in my head.
Posts: 251 | From Baltimore | Registered: Oct 2012
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Catgirl
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posted
The cd57 is just a tool to help your doc figure out where you are in treatment (improved or gotten worse). It's not set in stone that just because your number is 200 that you don't have lyme. It's just a number. Mine has always been high.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
My CD 57 is 200 too. I tested postive for Lyme, Bartonella, and Babesia, I also had mold illness
I am using Cholestrymine also. I think you should do an HLA DR test to see if your body can't detox Lyme or mold or both. Then you will know if the mold is an issue for you, and the Lyme too for that matter, as far as deoxing it.
If you do some Lyme antibiotics and herx, that is your answer right there, whether Lyme is a problem for you or not.
Posts: 845 | From Northeast | Registered: May 2011
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poppy
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posted
Sinusitis is most often caused by fungus.
I agree with the other posters about the CD57. Not a direct correlation.
Posts: 2888 | From USA | Registered: Mar 2004
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Catgirl
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posted
xrunner, I forgot to mention parasites. Go after them. We all have them, IMO. Read everything you can that glm1111 (Gael), Tammy and others post on them. They are a huge part of lyme. The lyme docs (except Dr. K) are pretty clueless about them. Doc H. is just now starting to suspect them.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Okay thanks for all of your input. At my next appointment I'm going to express my concern about taking to cd-57 too seriously and that I dont want to overlook Lyme still being a problem for me. I got taken off Doxy last week because I think it was adding to my head pressure. I am questioning using the cholestryamine because its going to pull out my medicine as well. I think I'll ask for stromectol next time as well for parasites. She said she cant treat my Bartonella, but that the Bactrim I'm on right now should be hitting it a little bit in the mean time.
Just looking back on last year, after they went in for surgery, the doctor said there was no yellow or green snot.. my mucus was just very very thick, completely clogging my right frontal sinus cavity. They performed a balloon sinpuplasty. I never had an sneezing, runny nose sore throat or cough. I could breathe fine through my nose. I just simply went from February 13th (feeling great my normal self), to waking up February 14th, feeling completely different and weird. By that Friday I took myself to the E.R and thats when they told me I had acute sinusitis, then 2 weeks later I had "chronic". Put through surgery. Recovered a week. Btw, this is all while on Avelox and while staying in the room where there was mold. However, I have been in that room already for 9 month as well as worked at the yoga studio where there was mold for the past year. Also, no one else has gotten sick from the mold. I also had allergy testing done, and I wasnt allergic to mold . 3 weeks after surgery I had 3 days absolute symptom three. Then, I felt a tight pressure in between my nose in my sinuses. Ever since then, it has greatly progressed in many other symptoms (chronic head pressure, body jerking, floaters, crawling sensations under the skin, after images, auroras, word search problems, short term memory sucks, tired arms, fatigue, eye twitching, etc.). Then in Sept, found the LLMD and was diagnosed. ugh
Posts: 251 | From Baltimore | Registered: Oct 2012
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Catgirl
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posted
Sinus issues and practically everything else you just mentioned screams parasites and lyme. Bactrim does work on bart.
Also, Dr. Burrascano said in a previous presentation that some of the sickest patients have high CD57s.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Xrunner. I've read in depth about the CD57 test and let me tell you something.. That is a perfect healthy number. Personally I trust that one. Mines remained about 220 and the very first LLMD I saw was stumped. Now think about it.. Stumping a Lyme doc? Yeah umm..'perhaps your culprit is not any of these issues at all. Most chronic Lyme patients have either real high CD 57 or a very low one. So.. Very possible that you killed it off at round one and your Lyme load was low. Could possibly be the babs, and I say look into gentle ways to treat that because they do exist and are much better for your immune system. Good luck.
Posts: 267 | From South | Registered: Oct 2011
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MichaelTampa
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posted
Regarding the mold, it's not whether you're allergic, it's whether your body can appropriately detox it. I would urge you, given the totality of your situation, to get tested for the mold genotyping (HLA "haplotyping") per Dr. S.
His website gives you the information you need to get it done, if you have an agreeable doc to prescribe the test, it is survivingmold.com, but feel free to ask questions if you want to pursue and can't figure out the website.
Posts: 1927 | From se usa | Registered: Mar 2010
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lax mom
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posted
quote:Originally posted by lost11: look into gentle ways to treat that because they do exist and are much better for your immune system. Good luck.
I agree with lost. When I started treatment a year ago, mine was 88 (not great, but could be much worse).
Now, one year into heavy duty antibiotics, my NK cells are now non-functional. My number is now 3.
There has to be a way to treat effectively that doesn't demolish your remaining immune system in the process. I just wish I knew what that was.
MichaelTampa
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posted
lax-mom, have you been using much homeopathy? I'm just wondering because I've seen my CD57 go down when I've used homeopathy to target the bugs without giving enough other support (like adrenal/thyroid support).
Posts: 1927 | From se usa | Registered: Mar 2010
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lax mom
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posted
MichaelTampa: I had been on homeopathics along with about 53 different meds/supps. Every body system was covered. I was on too many things.
posted
I just wanted to add to this thread. Lax mom there are other ways to treat effectively with out wrecking your immune system.
I have NEVER taken any antibiotics for my treatment, I seeked out a ND first. She has been treating me with homeopathy and all herbal/nautral supplements. I am on things to boost my immune function as well.
My CD57 7 months ago started at 50, and I was sicker then ever. Now it has reached the maximum result of 360 and I feel fabulous! I swear by it, even though I was skeptical in the begining as well. it takes time, but the patience totally pays off!
You can personally message me if you are interested in what I take and such....
Posts: 148 | From AZ | Registered: Sep 2011
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