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Post by Carrie♥ on May 12, 2011 15:32:39 GMT -5
I know there are some experts here. How many have been tested and confirmed with either? They're doing the antibody refulx with western blot.
I've been sick again but not with big Morgs but with many other things. Kaiser just ordered a Borrelia B. and Bartonella H.
I imagine that's quite significant considering the correlation many of us have. Even tho I don't have the big Morgellon's symptoms, I sure am having lots of little internal things.
MRI showed normal, no white spots, no masses so I'm clear there, no thoughts of tumors or MS.
Since I've left here I've developed vertigo attacks maybe once a year, continued tinnitus, lost my gall bladder, pustular rosacea on ONE occasion cleared with doxy, small outbreaks with silver sulfadiazine, head aches on the right side of my head and optic neuritis where I'm losing vision in the peripheral of my right eye. No skin or lesion issues at all to speak of.
I've always thought full fledged skin Morgs were flukes but yeah, there is definitely something else going on that may be related...?
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Post by Carrie♥ on May 12, 2011 15:35:24 GMT -5
Daryl, I know there were a few real Lyme and Bartonella folks around. If you could let me know who I'd appreciate it. Or maybe I'm jumping the gun and should wait for the tests to come back...
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Post by toni on May 12, 2011 16:48:51 GMT -5
Hi Carrie ;D
I had the Igenex test that was positive for the Borrelia antigens.
As for the test overall, it was considered negative. But, we know how that goes.
I don't have the typical lyme symptoms though. In the beginning of Morgs-or my knowledge of it, (because of the breakouts and black specks) I did have the sweats and then the chills. That was short lived though.
I took Bactrim, and I know the Doxy is what's recommended, but I couldn't take that (made me sick in the stomach).
The Bactrim (I still take) but only for 10 days in a row, and I only do this "run of them" every few months, for maintenance, and so far it's kept things status quo.
Not better, but not any worse.
I'm sorry to hear of the other things going on with you. Headaches...yeah, those seem to be popular with Morgs.
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Post by ibzahp on May 12, 2011 17:13:41 GMT -5
I,ve got Bart and lyme, HPV6,hepc,mycoplasma -----------epsteinBarr and some other stuff.Going to go burn money at the lyme doctor soon as i seem to be getting worse w/out antibiotics lately.Lots of very fine fiberglassy fibers,allergies,headachesmore skin stuff. itchy itchy scalp.so back to the doc i go
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Post by Carrie♥ on May 12, 2011 17:14:50 GMT -5
;D Hi Toni! Damn I <3 you! ;D Just as I'm about to tell you I honestly don't think I have either of these, I pulled up a pic of Bartonellosis which pretty much looks exactly like what I had on my face the end of '09 that cured with Doxy but often re occurs in small amounts. That stuff had my face tore up for a couple months, it was awful!!! Second pic down from this link...but they are saying that this is a special Peruvian Bart so wth? mizzouderm.com/bacteria-gram1.html
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Post by Carrie♥ on May 12, 2011 17:16:21 GMT -5
I,ve got Bart and lyme, HPV6,hepc,mycoplasma -----------epsteinBarr and some other stuff.Going to go burn money at the lyme doctor soon as i seem to be getting worse w/out antibiotics lately.Lots of very fine fiberglassy fibers,allergies,headachesmore skin stuff. itchy itchy scalp.so back to the doc i go You don't have insurance? That makes me angry. Are those clinical diagnosis? So you still have them...? They don't get rid of the Lyme and Bart?
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Post by ibzahp on May 12, 2011 18:07:50 GMT -5
can,t get a doctor who takes medicare to prescibe the antibiotics and so off to lyme doc i go. The bartonella and the other stuff except lyme are lab diagnosis lyme is clinical.had about 3500 bucks worth of lab tests at one point and lots of stuff wrong
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Post by Carrie♥ on May 12, 2011 18:23:53 GMT -5
can,t get a doctor who takes medicare to prescibe the antibiotics and so off to lyme doc i go. The bartonella and the other stuff except lyme are lab diagnosis lyme is clinical.had about 3500 bucks worth of lab tests at one point and lots of stuff wrong Geeze, that is so discouraging.
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Post by ibzahp on May 12, 2011 18:41:46 GMT -5
thats the trouble w/untreated lyme and friends. Its very chronic in me now and the bartonella makes me pretty miserable .Doctor thinks i need the IV meds and i can,t afford it. So it would be years trying to get rid of this stuff w/oral meds but i am really sick.tired, dizzy to and having some strange eye symptoms as well. you know when your eyes are closed and you press on them and see colors and photic stuff. I am having that happen at times when eyes are open,that and floaters ,i have an appointment in june.
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Post by itchin4answers on May 12, 2011 21:21:38 GMT -5
I was diagnosed with FM 15yrs ago & have had many (or most) Lyme symptoms prior to the onset of Morgellons, except the bull's eye rash.
I haven't had an actual Lyme test. I looked up my bacterial serology from 6yrs ago. The Infectious Diseases Specialist said I was positive for Rickettsia, never mentioned anything else. I was treated with a course of Doxycycline for 14days & showed no improvement. He reluctantly gave me a 2nd course of Doxy & my dad was with me at that appointment. I had a massive boil like lesion on my face. My dad pointed to it & said to the doctor “can you tell me please what that is on my daughter's face”. The doctor said “I don't know”. These were the other readings on the report.;
*0.57 Lyme *<128 Cat scratch Q Fever phase <80 Schistosomis * 0.500 Schistosomis E 0.300 TE Histolytic <50 Stronglyoide *0.39 Gliadin IgA 21 Gliadin IgG 28 Slightly elevated CRP & ESR
I don't really understand what those results mean. Though I was told that the reading for Lyme could be because I have been exposed to Lyme but it wasn't necessarily in the active stage.
itchin
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Post by sheredelight on May 12, 2011 21:53:50 GMT -5
(1) According to Dr. Harvey’s “PHYSICIAN PROTOCOL, BORRELIA-ASSOCIATED ILLNESSES CURRENT DIAGNOSIS AND TREATMENT” ( www.dstressdoc.com/Morgellons/skin%20physician%20protocol.htm ). suggests the following: > • IgG subclasses (Often S-C 1 and 3 are low. Occasionally Total IgG is low) > > • EBV panel (IgGs always elevated) > … > Testing for Borrelia-associated agents > > WHERE these tests are done is crucial. Borrelia and its associated agents can be difficult to find even with the most recent, carefully crafted tests. Rationale is brief here but stems from the initial test criteria being set 10 years ago, where inclusion criteria of specimens were for recently-infected individuals with high antibody levels, where test positivity depended strictly on antibodies (then state-of-the-art), and where two of five crucial Outer Surface proteins (P31, P34) were removed for vaccine research. Detection methods now available are for antigenic material, and are more sensitive and specific, such as PCR and DFA. > > The following specialized laboratories are recommended because they have given us the highest correlation with successful treatment, and greatly minimized the number of tests presently needed to find these agents at “standard” commercial clinical laboratories. See relevant attachments. > > • Igenex Laboratories (2) According to Burrascano (http://www.ilads.org/files/burrascano_0905.pdf ), the CD57/NK1 test is often low in Lyme patients, and this is backed up by people on “lymebusters” Morgellons board posting their CD57 results. For more info, see Stricker RB and Winger EE Immunol Lett. Decreased CD57 Lymphocytes Subset in Patients With Chronic Lyme Disease 2001 feb1;76(1): 43-48. (3) According to morgellonstreatmentsteps.com/Morgellons_Medical_informat.html the following tests are recommended > – CD-57+ NK (natural killer cells) (Lymphocyte Subset Analysis)2 > – IgG (188) and IgM (189) from IgeneX (Western Blot Antibody Assays for B. Burdorferi)3 > – CBC (Complete Blood Count)4 > – CMP (Comprehensive Metabolic Panel)4 > – ESR (Erythrocyte Sedimentation Rate)4 > – CRP (C-Reactive Protein)4 > – ANA (Antinuclear Antibody)4 > – RA (Rheumatoid Arthritis) or CCP test4 > – CPK (Creatine Kinase–MB)4 > – T-4 (Thyroxine)4 > – TSH (Thyroid-stimulating hormone or Thyrotropin)4 > – RPR (Syphilis detection test)4 > – ELISA-WB4 > – B-12 (Vitamin B12 or Cobalamin; Folic Acid, RBC folate)4 > – Heavy Metal Screen4 > – Hb A-1-C (hemoglobin)4 > – Insulin Assay4 > – SPEP (Serum Protein Electrophoresis)4 > – IgG-A-M levels4 > – IgG subclasses4 > – Herpes Panel4 > – C1q (auto-immune marker)5 > – IL-6 (Interleukin-6)6 > – TNF (tumor necrosis factor)7 > … – Chlamydia pneumoniae IgG/IgM Of these tests, it is particularly important to test Morgellons patients immune systems, as IMHO, Morgellons is an opportunistic infection brought on by Chronic Lyme’s damage to the immune system (and also, possibly through chronic chalmydia pneumoniae infection). In summary, the Kaiser Morgellons study completely “misses the boat” because the following tests will not be performed on patients: > – CD-57+ NK (natural killer cells) (Lymphocyte Subset Analysis)2 > – IgG (188) and IgM (189) from IgeneX (Western Blot Antibody Assays for B. Burdorferi)3 > – SPEP (Serum Protein Electrophoresis)4 > – IgG-A-M levels4 > – IgG subclasses4 > – Herpes Panel4 > – EBV panel > – Chlamydia pneumoniae IgG/IgM
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Post by violet on May 12, 2011 22:22:37 GMT -5
thats the trouble w/untreated lyme and friends. Its very chronic in me now and the bartonella makes me pretty miserable .Doctor thinks i need the IV meds and i can,t afford it. So it would be years trying to get rid of this stuff w/oral meds but i am really sick.tired, dizzy to and having some strange eye symptoms as well. you know when your eyes are closed and you press on them and see colors and photic stuff. I am having that happen at times when eyes are open,that and floaters ,i have an appointment in june. Hi, Ib: Having those kaliedoscope-type patterns when you eyes are open is very possibly a sign of an optical migraine (not sure that is the exact name, but it's close). These types of migraines are not painful--just scarey since it's so unusual to see those images and not know what is causing them. I had it happen one time and went to the opthalmalogist who told me that is what it was. Within an hour or two it was gone. You might want to check in with an eye doc.
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Post by itchin4answers on May 12, 2011 23:12:50 GMT -5
thats the trouble w/untreated lyme and friends. Its very chronic in me now and the bartonella makes me pretty miserable .Doctor thinks i need the IV meds and i can,t afford it. So it would be years trying to get rid of this stuff w/oral meds but i am really sick.tired, dizzy to and having some strange eye symptoms as well. you know when your eyes are closed and you press on them and see colors and photic stuff. I am having that happen at times when eyes are open,that and floaters ,i have an appointment in june. Hi, Ib: Having those kaliedoscope-type patterns when you eyes are open is very possibly a sign of an optical migraine (not sure that is the exact name, but it's close). These types of migraines are not painful--just scarey since it's so unusual to see those images and not know what is causing them. I had it happen one time and went to the opthalmalogist who told me that is what it was. Within an hour or two it was gone. You might want to check in with an eye doc. Violet, I have had the same experience. My eye specialist said optical migraine. At the moment I feel like I have a migraine like my head is in a vice. All I can put it down to is the mold; sore throat, sore eyes. My son William has a terrible itchy rash - hands, arms, under the arm, chest, looks pale & sick. I took him to the doctor today (not our normal GP, he was booked out). The doctor we saw had no explanation for the rash, prescribed Diprosone cream for 3 days, return on Monday to see our GP as she said William may need scabies treatment...? How do they come to this conclusion? No skin scrapings, nothing. Slap some cream on something you have no idea about and the doctors have the audacity to have a dig at Morgellons patients for self medicating. I swear, some of these doctors have got to be born stupid, either that or the mind control is working a treat...
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Post by freaky on May 12, 2011 23:43:49 GMT -5
Hi Carrie. Sorry you're not up to par.
xoxoxofreaky
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Post by Administration on May 13, 2011 8:56:30 GMT -5
Daryl, I know there were a few real Lyme and Bartonella folks around. If you could let me know who I'd appreciate it. Or maybe I'm jumping the gun and should wait for the tests to come back... Hi Carrie you know I hate it when your hurting U probably know this story already since you know me so well The day I was to get my lyme test as the doctor getting the test ready I was asking the doctor some questions and he blew up at me and threatend me with a vacation at the nutty So I thought Oh" hell I don't need this so I walked out and have not seen a doctor since for Lyme or morgellons issues So not really in the Lyme loop except what test to get and with what Lab and the types of meds taken It probably would be a good thing for me to know if I have Lyme with all the ticks I've gotten bit by and tromping around in the woods like I have done-- But at this point and at points in the future I'm so done with the whole narcissistic doctor fun --I've been heard to say over my dead body Hopefully someone on this board will be more Knowledgeable and helpful than I am-- You know I will always have your back and a shoulder for you to cry on cuz your the best-es one I would say Definitely wait for the test results to come back and see what the doctors come up with and don't forget to call me and let me know whats going on
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Post by 22122agin on May 13, 2011 13:34:20 GMT -5
Ant, nothing like a doctor "gone wild on a patient" to turn a path of a patient to true healing. ..Away from them! (Did you ever see the movie "Away from her?") Well, just the other way around changing the "her" to a "him", with "him" standing for the doctor you saw.) I have some private shocking stories about doctors, too. With CFS, I have seen so many of them. I would not blame you for not going back. 22122 Fond "hello" to carrie. Nice to see you here. Was wondering how you were and here you are. Wish I had some answers for you but I don't unfortunately. Not yet, anyway. 22122
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Post by Carrie♥ on May 13, 2011 14:05:14 GMT -5
Thanks for sharing guys. I'll be sure to be back to talk about the diagnosis whenever I get it. Last week I saw an optometrist, yesterday a neurologist, today my pcp and next week a ophthalmologist. I try my hardest to stay away from these fools but just can't.
Awe thanks Daryl, I know I can always count on you. I will stay in touch with you...forever...
And hello Freaky Deaky. I hope you're as fab as ever.
I again 22122. It's nice to see you and hope you are doing well. I was doing real well for a while, thought I was done with Morgellon's. Didn't realize I was just done with it the way I first knew it...now on to the next step I guess.
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Post by Carrie♥ on May 13, 2011 14:57:44 GMT -5
Thanks for the info, I'll check it out over the weekend. I must get back to work... I have Kaiser...yeah I can't afford independent docs.
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Post by ibzahp on May 13, 2011 18:54:49 GMT -5
Thanks Violet for the info on the migraines. I get horrible regular migraines too so that figures. I can't afford lyme docs either. Feel better Carrie ,Freaky and itchin. Ant I had a cow at my regular GP's just 5 days ago. They are one of those horrible poor peoples clinic in WA. And they failed to tell me that at 2:30 they gave my 1:45 appointment to another person. They wanted me to wait around and see the nurse practitioner whom they called "doctor". My appointment was w/my MD and I had waited three months for it. Well something snapped in me and I told them I wanted to see my MD and I wouldnt be standing around till 4pm to see a nurse practitioner. There were sorry people from all walks of life in that waiting room and I just wanted out of there. I told them I would come back whenever but I didnt want to see anyone but my lousy doctor. Now I have an appointment in a month but i don't think i have enuff humility to ever darken their door again;) Funny i am normally very quiet and laid back, that managed care stuff just made me snap.
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Post by bannanny on May 14, 2011 14:52:00 GMT -5
Hey Carrie... it's so good to see you babe, but of course not for the reason you're here. I'm so sorry you're hurting again... but if it all went dormant once, it should do it again! You know me... I've got you back in my prayers now!
big big hugs ~~ bannanny
P.S. Yeah, those lightning bolt type patterns and colors are due to migrains. I've had them since I was 13 and used to be down for 3 days with the things. So I can tell you what I've learned that will lessen the actual headache when it comes on...
What happens with a migraine is the blood vessel in your head begins to constrict, thus causing your vision to go haywire. Then once it begins to go back to its normal size, instead it expands even more... and is what gives you the excruciating headache. But if you get an ice pack the second your vision goes weird, place it on the base of your skull, and lie down in a dark room doing deep breathing excercises... then your headache won't be nearly as severe as they can become cuz the ice and calmness will keep the blood vessel from over-expanding. It works for me... and I used to get them really bad, so I know it'll help you guys too.
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