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FeatherRiver
Guests visiting Phase 1/2/3
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Posted: Tue Feb 1st, 2005 16:25 |
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| Steve and I were in Seattle and had some time to visit Sujay and Michelle and another sick couple "doin the MP" and we were discussing how many sick couples Sujay and Steve are treating and wonder how many other couples are using the MP. We now have the parents forum, so we know our children are suffering, but it just seems important to pay attention to the whole family and who gets sick and when. Men seem to get sick differently from women and carry it a bit differently and obtain medical care differently. (Some may not even know they are sick yet) For Steve and I, we have both been sick since childhood, both going thru many remissions, and coming together, getting really sick again, now, did we get each other sick again? It's all a curious puzzle, but how contagious is this stuff?
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DianaF:CFS,Fibro,RA since childhood, Dysautonomia
VitD 22/33, 7-04,Started Ben.MP 5-04 Ben 40mg q6h + Mino 100mg q48h + Quer as needed, Phase II Started Jan 15, 05 Ben 40mg q4h stopped mino and Z temp 2/22/05
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Dr Trevor Marshall
Foundation Staff
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Posted: Tue Feb 1st, 2005 16:52 |
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Diana,
This is one of the topics for round-table discussion on the Sunday of our conference, but I have extended the question you asked (because we have the NIH policy-makers there) by adding "When do we have the responsibility to warn."
Here is the text from our sarcoidosis brochure, citing data from the ACCESS study. Although the incidence found in this sarc study might seem low (at just a few percent) it is actually quite high, especially as they required both patients to have full blown sarcoidosis, and not RA, CFS or one of the other Th1 diseases...
Can my spouse get sarcoidosis?
The ACCESS study noted that there were five husband-and-wife couples who both had sarcoidosis. Yet sarcoidosis is such a rare disease that, based on statistics, there should have been none. Perhaps this is weak evidence of communicability, or maybe it indicates that shared experiences increase the risk factors. Nevertheless, It would seem wise to monitor the health of spouses.
..Trevor..
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kgg
Member
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Posted: Tue Feb 1st, 2005 17:00 |
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Interesting FeatherRiver. There is much discussion on lyme boards about transmission. And it is not uncommon to have couples both be infected. Actually, entire families infected is not uncommon. The question always raised is did they infect the other partner? Can they re-infect each other? Or did they get infected from their environment, ie: vacationing, gardening, hiking, etc.
Personally, I have raised the question about whether my husband should be tested and treated. And it is always met with a scoff. His immune system seems to be able to be strong at this point. But the question remains in the back of my mind.
Karen
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CFS 35+ years,FMS 6 years,Lyme(dx-6/04),ISAC syndrome, TMJ,tinnitus,HHV6,CMV,EBV. Basically always remember being tired.
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CelticLadee
inactive member
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Posted: Tue Feb 1st, 2005 18:25 |
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I'm glad you brought this up FeatherRiver. It is a subject that keeps troubling me.
I see members of my family suffering from symptoms that point to TH1 disease and have tried to gently educate them.
My Dad seems very resistant and is the one I fear has the most advanced symptoms. He is suffering daily and at his age it is taking a big toll on his health. My mom also has symptoms but she isn't as vocal about them and hers aren't as noticable physically.
My dear hubby and one of our sons also show some troublesome signs but they agree that if they continue to have symptoms compound and worsen they will test their D metabolites in the future. They are able to maintain normal lifestyles.
Then as I look at my brother and my sister I cringe knowing they look like candidates also. As I mention to my family my concerns I am afraid they are beginning to think because I have TH1 disease.... I must think EVERYONE does. 
CelticLadee
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FM Dx 9/2002| Pericarditis Dx 7/2002| CF migraines MCS IBS food sens <Shingles 2001| NoIRs/ZO 25% cream| MP8/04| PH2 1/05| PH3 7/06| 25D/1,25D: 27.9/63.9 (07/04) 25D: <4 (02/08)
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Linda J
Member in Phase 3
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Posted: Tue Feb 1st, 2005 19:16 |
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The contagious aspect brings up the issue of whether a person following the MP could become reinfected from a spouse who is not displaying the same illness features, but might have other more mild issues, or not be at a point where they are displaying illness symptoms of any kind yet but are still infected.
My husband has not developed the full-blown illness symptoms that I have. But he has a lot of very subtle symptoms that on the surface can be explained away. The coincidence of how frequent they have seemed to become makes me a little nervous. Especially over the last couple years he's had more aches and pains, moodiness and stress intolerance, allergies and sleep problems. But then, having a spouse who is severely ill/disabled can put a huge strain on a partner, and one has to take into consideration how stress and normal aging can affect health.
I've wondered if I go through all this work to get myself treated, will I just turn around and become re-infected from him? I could never get him to agree to doing the Marshall Protocol. First, he has too much impulse control/self-indulgent problems, and wouldn't be able to avoid sun or vitamin D foods adequately. He's an avid golfer, and would never agree to give up golf, even for a while. He's come right out and said that he'd rather die than give up golf. So, I'll probably have to consider myself never completely cured, and continue treatment for as long as we live, or until someone develops a drug to lower 1,25 D levels without having to avoid sun/lights/vitamin D, and treatments that don't cause herxing, which probably won't be in our life-time with the way the field of medicine seems to resist changing.
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Lyme thyroiditis IBS MVP PTSD MCS 125D63 SAM-e Claritin probiotics silymarin magnesium 5htp homebound low lux NoIRs 25D8 (Oct08)
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FeatherRiver
Guests visiting Phase 1/2/3
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Posted: Tue Feb 1st, 2005 19:26 |
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Hmmm, men skoffing, is my point exactly, ignoring their symptoms. Talking to friends, family, co-workers, and heck, even listening to strangers in line at the store, we can recognize the symptoms they are describing right away. It's such a difficult and complicated matter to explain to them and not an easy plan to follow. Not to mention they look at you like you are talking woo woo. And still so much unknown. But, like the 100th monkey theory, if enough people and energy concentrate on the issue, SOMETHING has got to change!
Some awareness on NEW mens health issues should be looked at besides the heart and groin areas. Like how to teach men to talk to a Dr. and describe changes, such as fatigue and pain, etc. Perhaps when someone comes in with Lyme or Sarcoidosis, etc. in the future the Dr. would automatically ck. out the whole family.
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DianaF:CFS,Fibro,RA since childhood, Dysautonomia
VitD 22/33, 7-04,Started Ben.MP 5-04 Ben 40mg q6h + Mino 100mg q48h + Quer as needed, Phase II Started Jan 15, 05 Ben 40mg q4h stopped mino and Z temp 2/22/05
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rick
Member in Phase 3
| Joined: | Fri Sep 24th, 2004 |
| Location: | Australia |
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Posted: Wed Feb 2nd, 2005 00:01 |
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This subject is of great interest to me because my partner is now positive to Rickettsia after my onset two years prior.
The question I have is: If I harboured the bacteria within my body, is that bacteria affected or altered by my immune system before perhaps transmission to my spouse?
I am sure I passed on the rickettsia to my spouse because my prostate was one of the first warning signs I had after my initial bout of fever. I was concerned that the prostatitis could be an issue for us and I sought medical advice in regard to passing on any bacterial infection to her because of my prostatitis, I was assured this could not happen, as no bacteria was cultured or were evident from my prostate tests. That was strange in itself considering the problems I was experiencing. It all makes sense to me now after my Rickettsia diagnosis 12 months after the prostate tests.
My partner experienced a couple of health issues during that 12 months of limbo, they were shingles and of course a severe urinary infection.
After I was diagnosed with Rickettsia the warning bells sounded for me and we eventually had her tested and her anti body titres were slightly higher than mine, does that suggest that the Rickettsial bacteria was weakened by my immune system before transmission to my partner or could it have been strengthened by inhabiting my prostate by it’s stealth nature whilst being bombarded with those initial doses of Quinolones? (As prescribed by the Urologist)
Now my partner shows signs of Diabetes type two without any contributing lifestyle factors other than being positive for intracellular bacteria, I am herxing on the MP with prostate involvement and my partner is herxing mildly on the Jadin protocol with urology and GI involvement, her health has not deteriorated to the same extent as mine (yet) and she leads a normal functional life with her Vit D tests in the low range.
My logic suggests to me that my prostatitis was caused by CWD bacteria and was then transmitted to my partner via sperm or blood from the inflammation within my prostate. I do not believe any arthropod vector was involved in her becoming positive.
Our proactive approach to these issues is the first step in reclaiming our health back.
I hope Urologists start to attend Trevor Marshall’s conferences and maybe look a little deeper into the underlying causes of prostatitis and the implications that may have for a male’s partner.
Let’s look at the big picture!
RICK
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Rickettsia, CMV,Cpn, Prostatitis,(resolved)
MP since JULY 04 VIT D,24 1,25: 27.
Ph3July 05,OLMESARTAN 40mg Q8
25D <12 1,25:33
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Dr Trevor Marshall
Foundation Staff
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Posted: Wed Feb 2nd, 2005 00:52 |
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Hmmm, looks like this will be a lively discussion at the conference.
A Chinese team recently proved (using PCR) that intracellular mycobacteria are transmitted in sperm, and I see no reason that intra-cellular species such as rickettsia and CWD would not behave in the same way.
You see, the immune system is not killing the bacteria, the phagocytes have been parasitized.
I wouldn't worry about re-infection though. We have no indication that the stage 3 antibiotics will not be able to keep reinfection well under control. Remember that you are exposed to the CWD in food and drink, and in vaccines. Partner transmission is just one way a reinfection could occur, and it will be managed effectively by periodic 'top-up-courses' of the antibiotics, IMO.
..Trevor..
ps: Anybody actively on the MP is not going to have their bacterial load increased in this manner. Bacterial load goes monotonically down during MP therapy.
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Tobi
Member
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Posted: Wed Feb 2nd, 2005 08:37 |
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My husband and I have recently been discussing just this issue. He, in the past 6-7 years ( which is as long as I have been sick), has developed hypothyroidism , wheat intolerance ( as confirmed by raised anti-gliadin antibody), lactose intolerance, insomnia, a feeling of being "not quite well" tinnitus, hearing loss,and lethargy. Most significantly, also atrial fibrillation which has him on beta-blockers, asprin and Digoxin, with the recommendation of Warfarin, which he has avoided against doctor's instructions. He is also chemically sensitive - has palpitations and arrythmia in response to cleaning fluids, etc., and in response to any preservatives in food, and also to soy products. At this point, if he is meticulous about avoiding that which provokes symptoms, he is functional, although certainly not fully well.
We are not sure who presented with symptoms first, since his are more subtle, but certainly they occurred at similar times, in retrospect. He also had a tickbite many years ago when we were living in South Africa, with an acute illness, which was treated with tetracyclines and was fully resolved. This was not lyme, but what we called "tickbite fever" in South Africa and was relatively common. This may or ( in my view, was probably not, since it occurred over 20 years ago) be part of the picture.
Any ideas?
Tobi
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CFS,Rickettsia Conoori-,HHV6,Ureaplasma(all 3 culture,PCR) 25D 16.4ng/ml,1.25D 26pg/ml.Ratio 1,3 Blood probably NOT frozen Benicar 9/18/04 Mino 100mg 10/18/04 Phase 2 01/26/05
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kgg/mpg
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Posted: Wed Feb 2nd, 2005 13:59 |
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Tobi, IMHO, sounds like lyme to me.
Karen
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17 yr old, home bound. VitD1,25=38, VitD25=16
DX: Lyme,CFS, HHV6, EBV, mycoplasma pneumoniae, food allergies, learning difficulties and asthma.Current meds: Singulair, Neurontin, Prilosec, Zantac, Lexapro, Testosterone cream
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FeatherRiver
Guests visiting Phase 1/2/3
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Posted: Wed Feb 2nd, 2005 19:04 |
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| Which means he was bitten by a tick, got sick, then was the carrier and got you sick, then you became the carrier, and on and on and on,
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DianaF:CFS,Fibro,RA since childhood, Dysautonomia
VitD 22/33, 7-04,Started Ben.MP 5-04 Ben 40mg q6h + Mino 100mg q48h + Quer as needed, Phase II Started Jan 15, 05 Ben 40mg q4h stopped mino and Z temp 2/22/05
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shegeek
Member in Phase 3
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Posted: Wed Feb 2nd, 2005 20:35 |
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I am dead sure that I've infected my husband. He fractured a few vertebrae skiing a couple of years ago, and since then he's developed type II diabetes (is injecting insulin) and insomnia, plus gets stabbing nerve pain attacks and a lot of other sx that look disturbingly familiar. I'm warming him up to the idea of doing the MP, but he wants to see me go through it so that he knows what to expect. We also decided it would be less stressful for us if we go through it one at a time, so that the one who's not on it can take care of the one who is.
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FMS,IBS,osteoarthritis,osteopenia, hypertension/ 1,25D/25D=45/44 (10/04), 44/13 (1/05), 36/8 (7/05)
25D<4 (6/06) 25-D=5 (4-08). Avoid light & D w/NoIRs 11/04 Benicar 40mg/q4h(since 1/27/05) Phase 3
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TX Lyme Mom
Member
| Joined: | Mon Jul 12th, 2004 |
| Location: | Texas USA |
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Posted: Wed Feb 2nd, 2005 20:58 |
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LLMDs tend to agree that Lyme disease is more easily transmitted from male to female than vice versa. Bb has been found in many body fluids, including semen, saliva, tears and breast milk.
(owever, it's usually not bound in the bloodstream because it doesn't like the high oxygencontent of the blood.
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Care-Giver & Lyme/CFIDS/MCS Support Group Leader; healthy (not a patient) so no D-level data for me
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Paula Carnes
Guests visiting Phase 1/2/3
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Posted: Wed Feb 2nd, 2005 22:13 |
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We now have three of us with borrelia out of four. Who knows what else we may be infected with as I have two mycoplasmas and babesia. My husband and I are doing the MP but son is taking Chinese herbs. Boy, does he smell like garlic. I think, as husband and I progress son will switch over if he relapses. The good news is that now we have some hope of a real treatment.
Paula Carnes
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spacee
inactive member
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Posted: Thu Feb 3rd, 2005 05:46 |
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In 1986 there were 4 of us who became ill at the same time (just friends). One managed to recover, one seems to have a milder case, one now has two children with it and I have had the worse case of it (CFS). My twin has gotten it and recovered, my cousin is now on disabilitiy. Plus I can't tell you how many people I have been in contact who have seemed to have gotten a mild case and "recovered". I feel like Typhoid Mary. One son has symptoms but is holding his own. Another has ADD which could be linked to this but it runs in his dad's side of the family But so does FM, Lupus and Bipolar.
I know some people disagree with recovering and want to say "remission" but my sister's blood work which was REALLY bad has returned to normal so that is why I say recovered.
Surely the contagious aspect can't be denied forever but it seems like they are giving it their best try. Good luck Trevor at the mtg. Hope it goes fabulously well.
Linda
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CFS/FM/tachycardia/bladder and skin inflammation. C-Diff overgrowth 1995
clonazapan 1gm HS, Xanax .50mg HS, Premarin .625, Ultram 50mg BID Restart 9/15,NoIRs, No Vit D diet,Probiotics,11/12/04 25D=25, 1,25D=70, 9/9/05 25D 14, 1,25D 37. Beni Q6H, Mino 10
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OzJen
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| Location: | Perth, Australia |
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Posted: Thu Feb 3rd, 2005 06:08 |
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My father has been diagnosed with Diabetes type 2, glaucoma, heart disease, high blood pressure, osteoarthritis, transient ischemic attacks and more recently gallstones and pancreatitis of unknown cause (lasted nearly all of last year). He has multiple allergies, his life revolves around his symptoms, yet he says he is in excellent health. He has put down his symptoms to age or the war or the transient ischemic attacks.
I got sick within weeks of meeting my husband. He had a reputation then, unbeknown to me, for serious flatulence. Treated as a great joke, I have since recognised most of the symptoms of at least Candida. He is lethargic, has low iron, frequent URTI's, possible sleep apneoa - he wakes frequently choking - food cravings, low blood sugar attacks, and is now allergic to wasp stings. I now find myself in the distressing situation of trying to have him diagnosed with Asperger's Syndrome behind his back. AS is believed to be a mild form of autism, and is associated with CFS in spouses. AS is a spectrum disorder. The people in the movie "Mozart and the Whale" are more serious cases. I have not seen this movie, it has not been released in Oz yet, but I fear it may prevent many CFS sufferers from recognising their spouses condition. A mild case in a spouse will have a devastating effect on a marriage, but not be recognised by others, since it is a disorder mainly affecting only close relationships. He certainly had this disorder before I met him, so the question remains as to whether he infected me (if related to CWD or CFS) or I am infecting him (if not). AS is largely unknown. I have had a preliminary diagnosis from an expert in AS in Perth. He admits little is known about the disorder in adults and it is very difficult to diagnose - sound familiar? The urgency is taken out of this situation by the certain knowledge that my husband could not follow any protocol, let alone one as strict as the MP. I take great comfort in Trevor's belief that my husband's failure to assist his own health should not affect my ability to get well. Failures in his ability to recognise my need for help and to assist generally with my illness certainly do make getting well a lot harder.These failures stem from his disorder, not from any lack of love or concern on his part. I urge any CFS sufferer who is married to check out this disorder, treating any connection suspected with compassion and wisdom. It has taken courage to share this, but I believe it may possibly help some immeasurably so it would be wrong to withhold it. AS is a new syndrome only really known of since 1995. The connection with autism may indicate either toxic or CWD aetiology. It is passed down families and mostly affects males. My father-in-law had what I consider a clear cut case of AS, yet his entire family does not know it. Research and help is desperately needed. I hope I will not regret sharing this.
Last edited on Thu Feb 3rd, 2005 06:31 by OzJen
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CFS 24+yrs;
R.conori, Q fever antibodies
1,25D 8/10 64.6
25D 4/3 19.6
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Tobi
Member
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Posted: Thu Feb 3rd, 2005 22:49 |
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Jen,
It certainly did take courage to share such personal information, and thank you and congratulations for doing so. Really, we are all too sick, live such devastated lives, which affect family members in horrendous ways, to be awkward about much. It is only through talking about what goes on in our lives and with our family that we can learn.
I trained and practiced as a Clinical Psychologist before my illness, and had some contact with Asperger's sufferers. The most difficult and cruel aspect of the condition is the inability of the sufferer to be empathic - he/she literally is unable to see a situation from the point of view of another. At the same time, most other aspects of functioning remain intact, with exceptional competencies in certain areas. This is not only exceptionally difficult for those in close relationships with the sufferer, since on the surface it seems as though he "doesn't care" when in fact he can't care, but the sufferer himself often has difficulty in seeing the consequences of his own actions on himself in an age-appropriate way. Because of this, Jen, he of course would find it difficult to folllow the MP, or to help you to do so, since by definition, he would be too egocentric, in the true sense of the word, to do this. CFS is a lonely journey, but so much more so without the support of a spouse, whatever the reason.
So sorry you have to struggle with this too . Perhaps one day the questions about autism, and the alarming rate of increase over recent years will be answered.
Tobi
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CFS,Rickettsia Conoori-,HHV6,Ureaplasma(all 3 culture,PCR) 25D 16.4ng/ml,1.25D 26pg/ml.Ratio 1,3 Blood probably NOT frozen Benicar 9/18/04 Mino 100mg 10/18/04 Phase 2 01/26/05
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
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Posted: Thu Feb 3rd, 2005 22:58 |
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Dear Jen
I too am *familiar* with AS and believe it may also be *related* to the th1 and therefore treatable with MP.. but as you say not likely to happen..
Barb xox
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Lee
Member in Phase 3
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Posted: Tue Feb 15th, 2005 14:06 |
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Jen....thank you so much for sharing your story!!! It sure "hit home for me"!
I too got sickly within months of marrying my husband. I too was unaware of his health until after our vows. He immigrated from scandinavia our first year of marriage and he sure seemed to be the strapping typical healthy 47 year old. He bragged of never having an antibiotic in his life.....confessing to have some sinus problems and abit of "flatulence" sour tummy and possible GERD. I noticed he has highly sunsensitive skin and eyes.....and a possible missed heartbeats in relation to a abnormal sleeping pattern. I immediately got him off caffine, high fatty foods and red meats.It was about this time I felt fluish. It would come and go....so I concerntrated on gettting "him well'! After many doc visits including four specialist we found and documented his sleep apnea, eradic heartbeats, GERDwith extended uvula, and numerous sun sensitivities and allergies.
We settled in and with alot of hard work and dietary changes he begin to get better. So much better better he was off heart meds and allergy meds by summer 04. Thats when I fell apart. July 4 I awoke to very painful swollen ankles, skin lesions, and overall devasting health changes! Local docs were confused and confusing so I took myself to a rheumy knowing that my feet and ankles were the worst, I can barely walk!!! He took one look and guessed "sarcoidosis". Sure enough many tests later.....and I mean MANY....he was right!!! I flunked my ACE,CRP,blood calcium,TSH, T4, T3 and Vit D's,(10)xrays and (2)CT scans. Sent to the Univ after seeing local pulmon docs that knew nothing of sarc.....I was sent home saying it was "steroids" or nothing. I chose nothing knowing that I already had early osteoporosis, osteoarthritis and hashimoto's.
I was going to fight this myself Plan A....armed with the internet and the strong will to beat this I found the MP and am on Benicar now for 3 weeks!
The hardest part was finding a doc......that trusted me and my choices. I had to promise that my family would not sue......no matter the outcome?! I will start mino next week. Thank God for Trevor and all the hard work he and his group have done!!! Even though my doc maybe dubious.....I am not and I know this is the best chance I have of gaining a full life again!!!
I also will be implementing Plan "B" to get husband tested.....as he and I both have figured this came from him.....and he is far from well. He got better as I got sick....and this too could change as I get better!!! Thanks to all that have too shared their stories and experiences.....any insight into our delimnas would be greatly appreciated!!! Thank you!!!!
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2003 SARC w/COPD Hyper-Flex Fibro. Hashimotos
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| 2008 D25-9.sunlight w/noirs
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Kaye
Guests visiting Phase 1/2/3
| Joined: | Tue Feb 1st, 2005 |
| Location: | Cleveland, Ohio USA |
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Posted: Tue Feb 15th, 2005 18:32 |
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| I am interested in something Trevor mentioned about the transmission of bacteria from sperm what about kissing and oral sex as well is it possible that someone with a cold sore on there month could transfer bacteria to someone through oral sex and than that person get shingles.
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