 |
| Author | Post |
|---|
Over-Heated in PHX
Member in Phase 2
| Joined: | Sun Oct 22nd, 2006 |
| Location: | Arizona USA |
| Posts: | 74 |
| Status: |
Online
|
|
Posted: Fri Dec 7th, 2007 01:29 |
|
 ver-Heated in PHX ~ reporting:
11 months on the MP and nearing the end of Modified Phase 2, Benicar 4*day + mino + modified phase 2 abx's
I have a Lyme disease test result to report.
B. BURGDORFERI IgM Ab, WB POSITIVE A
BANDS PRESENT 41kD, 23kD
There is a page missing out of my report. The doctor apparently did not notice the omission. This is a RheumatologistMD, and somehow he and I just don't hit it off. I believe his practice is trialing mega D doses + fish oils and "getting results" as he puts it. This may be the rub in part. I could go on, but I'll stop here. Anyway if you are looking for a RheumatologistMD in Phoenix, AZ who favors the MP, I can tell you one not to see.
At any rate, I asked him what the IgM meant and he seemed to think this type of result indicates "new" disease. I'd like some opinions. He continues that it could be ongoing disease as well, and that if I have active disease I would need to treat it. Apparently he does not recall that I am treating on the Marshall Protocol. He tells me he cannot interpret this result, and wants me to see an infectious disease doctor; and he adds.. who would also be able to interpret, "these 'herxheimer' reactions you are getting" ..as infectious disease doctors are the kings of understanding in this area... at least in his opinion!
 hmm.. I wouldn't mind some educated opinions on this subject.
He verbally reviewed my tests results, stating as he turned the pages "B. Burgdorferi negative.." "not a single band" "not a single positive band". Then suddenly, he reaches page 4 he notes, "POSITIVE".
I'm thinking the result could possible have been negative before the MP, but I never had the Elisa or Western Blot test run, only the Bowen, so I will never know if Lyme was virtually in hiding prior to prompting with MP ABX.
I probably will never see an Infectious Disease doctor. I was today in fact told by my RheumatologistMD that he would not want to see me again in the office until I had seen an ID doc, and that it may be hard to get in to see one.
So there I be. I must so need to "treat" this active LyLyme disease, but won't ever be able to, since the whole process outlined to me today is some sort of labyrinth. Gosh, I sure am glad my mind is not as fouled up with confusion as it was 11 months ago and that I have support and reassurance here. The absolute folly of telling a patient: "you have active Lyme disease"(I think) and "if that IS the case, you need to be treated" "but, please, not here at this office.. until of course you somehow manage to do the impossible.." 
Still, ver-Heated in PHX
Last edited on Fri Dec 7th, 2007 01:30 by Over-Heated in PHX
____________________
Lyme Babesia hypothyroid OSA OA FM Morgellon's Uterine Fibroids 125D61 25D16 Ph2Jan08| Daily: Lyrica, Levothroid; and Ibuprophen; Loratadine| (NoIRs 2% outdoor&computer use, low lux home, homebound, limited outings covered up &Keto
|
Joyful
Member in Phase 3
| Joined: | Sat Jun 9th, 2007 |
| Location: | West Coast, USA |
| Posts: | 483 |
| Status: |
Offline
|
|
Posted: Fri Dec 7th, 2007 01:58 |
|
Greetings my shivering, over-heated friend!
I am providing to you some information I found helpful at one point in my pursuit of healing. You seem to already get the fact that your immune system may have just recently recognized an infection that's been around a while. AND that you are already on the right treatment plan.
Also sounds like you and your ex-Rheumy are both glad to be rid of each other!
So, let's see if I add any understanding for you at all...
OH's test results:
B. BURGDORFERI IgM Ab, WB POSITIVE A
BANDS PRESENT 41kD, 23kD
B. Burgdorferi - B. stands for Borrelia, Borgorferi is the strain they tested against.
IgM - "This is the earliest of the antibodies to appear in response to an infection. It is produced in quantity." - Dr. Tom Grier M.S., Laboratory Tests
Ab - Antibody
WB -Western Blot (the type of test performed)
Bands - "... each band is an antigen complexed (bound together) with an antibody made by the immune system, specifically for that antigen (part) of Borrelia burgdorferi."
41kD - band associated with flagella that was found positive when tested for using your blood. "Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody."
23kD -band associated with Outer surface protein C (osp C) that was found positive when tested for using your blood. (These bacteria use various outer surface proteins (coatings) and adapt to using whichever one the immune system isn't attacking at the moment. I think.)
Gathered some of this information from an article at CanLyme.com.
Last edited on Fri Dec 7th, 2007 02:02 by Joyful
____________________
Lyme Babs Bart 125D50 Ph1Jul07 ModPh2Sep07 Ph2Feb08 cal/mag lysine hydroxyzine Valium NoIRs cover up low lux home 25D17 Jul08
|
jcwat101
Research Professional
|
Posted: Sat Dec 8th, 2007 03:26 |
|
I was positive for several bands myself, but not enough for the CDC criteria. I went to a Lyme doctor and was treated for over 2 years with various high dose oral antibiotic combinations and was taking some vitamin D (like 800-1000 IU daily) and I did not improve at all during that time. Since then, I have had considerable improvements on the MP, so I do think you are in the right place here at the MP site.
Joyce Waterhouse
P.S. See Borrelia
____________________
20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 1/05:22/6 9/05:1,25D=12 10/06:22/8, 4/07:25/<4 chewed Ben. 40mg q8h; Mod. P2: 2/23/05, P2: 4/06; P3: 1/1/07
|
Over-Heated in PHX
Member in Phase 2
| Joined: | Sun Oct 22nd, 2006 |
| Location: | Arizona USA |
| Posts: | 74 |
| Status: |
Online
|
|
Posted: Tue Apr 8th, 2008 03:05 |
|
16th month on the MP, April 2008, Midway through Phase 2, Benicar 4*per day, Mino every other, and another PHase2 antibiotic as directed.
Hello Joyful and Joyce,
Please forgive H for her long absences from the MP site; and lack of response to your kind and informative replies. In order to get an exact diagnosis, I will probably have to see an ID doctor. This "for the record". Possibly, I have a recommendation for another Internist who does treat some lyme patients. Due to the time factor in seeing an ID doc, I may try to schedule with the Internist.
Who knows he may be favorable to the MP, I have sent through my friend the MP address and she may have supplied it to him by now. However, word seems to be spreading about the MP; this internist may have already seen it.
Later I may post more interpretation of this info. I may type in the exact wordings here on this Quest form that offer a doctor the opportunity to use the test diagnostically.
NEXT SUBJECT: H is now in the middle of PHase 2, and started this phase in January after about 7 months on mod Phase 2, where I experienced A LOT of immunopathology in my nervous system and my skin eruptions from Morgellons continued, and still continues, but I am hopeful to see an end to the "new" (they are just nodules/lumps in hiding in truth) eruptions. Still I get some, often connected by channels in the skin to other nearby lesions.
AND STILL MORE:
I now have some large uterine fibroids and cysts on my ovaries. I'm down to this decision, partial (also called subtotal) hysterectomy or uterine embolization. I can't do nothing and wait it out. It is tooo incapacitating.
I can have this done with a horizontal or "bikini cut". I am not in menopause according to estradiol levels. Also by subjective history. It is likely I will retain all organs EXCEPT the top half of the uterus. I had a D&C and hysteroscopy two weeks ago. A uterine biopsy sample has been analyzed for cancer (whatever usual method, and is extremely rare to be found) and for lyme disease (at my request). I will see my doctor tomorrow and learn more. I met with the radiological interventionist, (also a doctor) who would perform an embolization.
My feeling is that my body is going through quite enough. The hysterectomy has a fairly short recovery time. I will do away with this fibrotic tissue and my body will not be challenged by it. The embolization procedure "kills" the fibroid and there is quite a lot of pain involved in the reabsorption of this tissue.
The embolization may fail to relieve the problem.
I know many women are happy to have hysterectomies, but I would really prefer to leave this "useless" organ .. my womb .. where it is, however, I know H would not want to conceive a child while still sick .. and by the time I am really well, I expect I will have entered menopause. It took me a long time with my muddled brain to figure that out. Amazing how hope can fog an issue. :'( ..but reality is what it is. Anyway, I have read several books that discuss the psychological aspects and these did help.
One thing I learned while reading is that the organ that is left (the cervix, or lower portion of the uterus) is re-attached to various tendons belonging to the bowel, bladder and something else that I forgot. At any rate, since the tendons that support the upper half are removed, this accomodates the required support. Also, I never knew that the uterus moved around quite as much as it does, sort of flops down horizontal when woman is upright. This means the fibroids on the back of my uterus are more like on top of my uterus in that position and they press out against the front abdominal wall causing pain below and to each side of my navel. Then when lying down or during sex the uterus moves "up and out of the way. I learned a lot reading these books and encourage other women to go to the library and read information as books have a lot more than the internet, and if you are like me, you have neglected to learn weird stuff you probably should know. I assumed because people who have fibroids in my family have painful breasts, and I don't, that I didn't have this condition. Silly me. Silly 3 female doctors of gynecology who did not catch this due to gingerly exams. One even told me the speculum was hurting because I was not having sex. DANG! I have learned that between the two operations, approximately the same number of women will lose ovarian function a little earlier, without removal of the ovaries. THe books acknowledge that this can happen sometimes because the person was destined to have an early menopause, so in many case it would not be KNOWN that the surgery or procedure induced the ovaries to shut down. Boo'hoo H don't like the side view picture of the woman when her uterus is gone.
But the pain is too much. I've had this enlarged uterus and these fibroids for a very long time. Some doctors knew or suspected but never did tell me to go and ask for an ultrasound. It was actually found in 2000 on an MRI of the lumbar spine but I was not informed. I asked, after my son was born in 1981 about the pain to the right of my navel, and the OBGYN told me it was likely an adhesion and that it would POP when I have ANOTHER baby. Of course that never happened and I lived with the pain and pressure on my right sacrilliac joint all those years. There is so much more, but I will STOP here GAD, I can keep going on!
Anyway, my theory goes that I should escape the long-term and painful absorption of this tissue. If the bacteria is dead within the tissue, I assume, I still don't need to go through it. H has to get her oars back in the water and I see an embolization as an unnecessary mountain to get over.
I can probably deal with the psychological effects and "minor" operation probably a lot better.
H is interested in comments and experiences. H will probably not be able to schedule until mid May.
Thanks! ver-Heated in PHX
Last edited on Tue Apr 8th, 2008 03:18 by Over-Heated in PHX
____________________
Lyme Babesia hypothyroid OSA OA FM Morgellon's Uterine Fibroids 125D61 25D16 Ph2Jan08| Daily: Lyrica, Levothroid; and Ibuprophen; Loratadine| (NoIRs 2% outdoor&computer use, low lux home, homebound, limited outings covered up &Keto
|
Over-Heated in PHX
Member in Phase 2
| Joined: | Sun Oct 22nd, 2006 |
| Location: | Arizona USA |
| Posts: | 74 |
| Status: |
Online
|
|
Posted: Wed Apr 9th, 2008 03:57 |
|
. . . Continued from above post, update after visit with gynecologist.
The ultrasound showed things are about the same internally, but cysts on ovaries are gone. The external fibroids were shown to be both anterior and posterior, on the front and back of the uterus. No abnormal new growths or enlargements from the one done 4 months ago. The doctor's report regarding the D&C found the uterus to be in good condition, enlarged still of course, but in good condition. The tests for Lyme were not yet returned. Anyway, the doctor provided a new option for "The Operation" as my brother calls it, the reason fir the switch I seem to understand has to do with now indications of cancer. and could be accomplished now by small cuts (rather than the "bikini cut") and laproscopically (tiny tools that errg ugh, grind things up.) Different risks for this, and I'd have to read up on risks for this type of surgery.
I learned that when the cervix is left in place, they do not need to reattach it as it is already attached by mother nature. That leaving the cervix allows the vagina to retain its shape over the years.
Also I learned that in the small hollow area in that "line' between the leg and abdomen that represents the groin, there exists a "round ligament" and that is where I hurt, the uterus is attached to that ligament and that can cause pain!
To help to rule out the bladder being the culprit, the doctor offered me a dose of marcane into my bladder, to numb it. I "accepted" as they put it in the report.
To see how the pain responds to this in various areas of the hip, if this helps during these several hours, than maybe interstial cystitis is the culprit, and my bladder is just sending pain around the abdomen for hijinks.
 K, that's all for now, H signing off . .
Last edited on Wed Apr 9th, 2008 04:08 by Over-Heated in PHX
____________________
Lyme Babesia hypothyroid OSA OA FM Morgellon's Uterine Fibroids 125D61 25D16 Ph2Jan08| Daily: Lyrica, Levothroid; and Ibuprophen; Loratadine| (NoIRs 2% outdoor&computer use, low lux home, homebound, limited outings covered up &Keto
|
Over-Heated in PHX
Member in Phase 2
| Joined: | Sun Oct 22nd, 2006 |
| Location: | Arizona USA |
| Posts: | 74 |
| Status: |
Online
|
|
Posted: Fri Apr 18th, 2008 06:40 |
|
16th month on the MP, April 2008, Midway through Phase 2, Benicar 4*per day, Mino every other, and another PHase2 antibiotic as directed.
ah yes.. WARNING WARNING.. still more updates from the gynecologist...
hi. Apparently I was scheduled for a D&C and hysteroscopy rather that a plain ole uterine biopsy because I had an abnormal cell show up on a pap smear.
All was fine. No cancer, TB or LYME.. the last which I requested, from the studies on the uterine lining.
Once schedules and insurance are settled, a date likely in May will be scheduled for a partial (also called subtotal) hysterectomy to be performed by laproscopy, amazing 3 or 4 tiny little cuts in the abdomen and the surgeon does the whole thing while watching on a screen. Just amazing.
Here's the question, Lyme Morgellons Sarc.. any of these or some other bacteria could show up in the fibroid material.. shall I ask for any specific tests for clues or help with these issues, or documentation purposes.
I swear I saw a publication in a journal which is elusive to my google search engine at present, that said in the study, that there was such resemblance between fibroid material and lyme disease samples that they could not see a difference.. I swear it was in a simple google search on the second results page for "lyme disease fibroid" .. I swear.. has anyone seen it?
STill, ver-Heated in PHX
Actually, now I think I found that article and am not sure what it says. If anyone would like to look at this article, let me know by PM and I'll send the link.
Last edited on Fri Apr 18th, 2008 07:54 by Over-Heated in PHX
____________________
Lyme Babesia hypothyroid OSA OA FM Morgellon's Uterine Fibroids 125D61 25D16 Ph2Jan08| Daily: Lyrica, Levothroid; and Ibuprophen; Loratadine| (NoIRs 2% outdoor&computer use, low lux home, homebound, limited outings covered up &Keto
|
Current time is 06:48 | |
|
|
|
|
