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My husband was diagnosed 3 years ago at the age of 40 with diffuse scleroderma which we did not know he had until the inflamation in his heart caused a heart attack. He has since lost around 100 pounds, had contracture of fingers, digital ulcers, lesions on his retinas which have affected his vision, pulmonary hypertension, raynauds, loss of pigment in spots of his skin, loss of some moblity, tightening of skin, adhesions in his lungs which have affected his breathing and recently landed him in the hospital because of shortness of breath. We recently drove over one hour to see a rhumatologist who proceed to tell me my husband is a very sick man and that there was really is not much to treatment what he has. He did little to nothing for him except give us a list of tests he said my husband needs and said come back when we had the test done. He said there was maybe one med that would help bosentan.We waited 2 months for this appointment to do nothing we did not even leave with a rx for any meds to help with scleroderma. He said until the tests were done he was not going to give him any meds. He made it sound like we should just go home and wait for him to die. I can not just do nothing and watch my husband die. I’m 35 and he is 43 we been togeather 18 years already. My husband’s health has worsed in the last year. He could not do all his duties at work so they just cut his hours to nothing to get rid of him beacuse his illness affected the abilty for him to do his job. Then we lost our place, two vehicles and I had to file for banckrupty an top it off he lost his insurance because he no longer was employed. We now are living with my husbands mom. He just got on Medicaid because we could not pay all the cost associated with this disease like treatments and expensive meds. We never had to ask anyone for help before this. We are not lazy people but some people and doctors look at you that way because once in you life you needed help and ended up on Medicaid. The rhumatologists we went to acted like he did not deserve a chance at living a longer and slowing the progression of the disesase because we are not rich. We may not be rich in money but we are rich in love. This is why I can not accept there are no options. When he was working we where paying for his insurance but because of circumstances out of our control with his health we ened up here with. My husband had no choice in this he does not want to have this disease. It just popped up out of no where and is making me feel like a loser being on Medicaid. Any help would be greatly appreciated. Thanks
My heart goes out to both of you – I have sytemic diffuse SD myself it can come on fast & can be like a freight train if not for my husband i would be in deep trouble. I would suggest you search some of the threads on here for SD & see what folks have done.
It can be hard to get things paid for but one tries. Definitely there is a connection in my opinion although not a doc to leaky gut this takes time & one may not be aware of it & diseases. Lactoferrin is something I have posted a subject & a link about for you to read this in enough amt’s some doc’s on the net suggest for a disease 1,500 mg’s others say 3,000 mg’s to help reverse this. Whey Cool by Designs for health contains in one scoop 750 mg’s of lactoferrin, there is one ancedotal case on the net of someone feeling that lactoferrin helped her to reverse her SD – I used this product myself when I was really ill a few yr’s ago & it did offer some help I stopped using it not realizing at the time I had SD. However, when I mention this please keep in mind there is little proven studies on this as who will fund them – certainly not in pharma’s interest to do so so please read up on what people have done with their diets & AP as well.
None of this is a doc’s advice so plse dont take it other than a maybe AP has more cases to some degree & certainly if you can pull that off. I have various lung & areas of involvement & it is a hard climb, but know some have made it back. Seldom is there much help from a typical Rheum’s office there are a few but not many who will embrace AP in their arsenal.
Jill systemic SD@cavalier wrote:
My heart goes out to both of you –
Hi Lisa–
Same here.
Wish I had an answer for you; I will keep you in my prayers.
TrudiLyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
Dear Lisa and Hubby
My heart goes out to you in this dark time–I am so glad you found us! I have diffuse systemic scleroderma but not as severely effected as your husband. I was diagnosed last summer and began antibiotic protocol early November (minocin 100mg bid and clindamycin 1200mg once a week). After an initial month of herxing (which made symptoms worse) I began to improve–skin loosening, arthritic symptoms disappearing, swelling in my hands lessening and my energy and ability to function much better. Then my Lyme test came back positive and my Lyme doc put the antibiotics way up which has made me feel worse again in the short term but I know this will settle soon. I have learned from this website that there is a high correlation between both mycoplasma and Lyme infections and scleroderma (to everyone’s surprise I am positive for both), so I suggest that he get tested for these things through a reputable lab. I have every confidence that in treating these chronic infections my scleroderma will resolve! In my experience the average doc will not suggest AP but many are willing to prescribe it if you ask them and print off some literature to back up your request. My rheumy is not very helpful but does keep up with my lab work and treats me in a civil but very cool manner because he doesn’t agree with what I am doing–but he has nothing to offer me but methotrexate which I refuse. Get the book Scleroderma: The proven therapy that can save your life by Henry Scammell.I got my doc to look at it too. If you request the moderators will give you a list of AP docs in your area. If you can get this treatment going make sure you take lots of probiotics and do detoxing (search detox at the top box for ideas). It is not an easy road back but I have heard from so many people who have got this illness into remission. Take a look at some of the testimonials. It is tragic the stigma around not having money–people don’t seem to realize that one event can change the course of your life in the blink of an eye. I am sure you will hear from lots of people. You are not alone and for me, knowing that has changed my life.
sending healing energy your way
kateSystemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, CHi–Firstly –if your husband has always worked and is now unable -he should certainly apply for social security disability —you can either start the process yourself or go to a disability attorney –they can not charge a fee and only earn a fee if they win the case –this fee is paid out of back benefits due only and is set by the government –secondly and most important is there is an option that has shown great success in treating scleroderma -that being antibiotic specifically minocin —I had a very tough case of diffuse scleroderma while not as severe as your husband and it was completely resolved over a period of time –Bosentan which is tracleer is used for lung issues and does not address the over all disease –I would suggest you request the name of a doctor near you who uses an antibiotic approach to treating scleroderma –this can be obtained from a Road Back volunteer —-Good luck –
richieAlong with trying to find a doc who will prescribe AP – I would recommend good pure water many SD patients are internally dehyrdated and may not even have much desire to drink this maybe one way that the infection can keep the patient from recovering but water is a great way to detox.
Jill
I have already got some very helpful information in just the one day I have been in this forum. I greatly appreciate all the post and prayers. I asked the lung specialist at the hospital today were my husband is and he said if his brochial scope tomorrow is ok he would try to start him on the Minocycline antibiotics. He said sure why not it could help and that it was a cheap antibiotic. So hopefully this will be the case and he can start this therapy. I have read some of the other posts on the forum and I am glad there is someone out there to talk to sometimes I feel so alone as if there is no one who understands what going through this is really like. I am 35 and other people my age can not even come close to understanding or relate. I am glad there is hope for people who suffer from this disease. Sometimes my husband says he does know what he did in life to deserve this. I would do anyhting to just make him better. I am going to get the book Scleroderma the proven therapy that can save your life. I am going to also check into the detox. I have only known of this foundation one day and what a difference in my outlook. Thanks to everyone who posted. Also my husband did apply for disability and was just approved. Thanks for giving me hope again. Watching someone with this disease is just heart breaking prayers to all dealing with these diseases. Hopefully one day this disease will get the recognition it deserves and be brought out into the public like breast cancer and other diseases who get so much more funding and research because ever person deserves a chance at life.
My heart goes out to the both of you as well.
Your Husband should be on CPP disability, you can get your GP to fill out there part and it is best to get the papers back from them and send along a personal letter pleading your case and pictures of hands if they are curling or hardened and any other pictures that could help you win your case. Most people tend to lose there case first time around, so keep this in mind and don’t get discouraged. Writing a personal letter and taking pictures helps put it on a more personal level with the person reviewing your case, and tends to tug at their heart strings.
You can also apply for the disability tax credit, and back date it when you are approved, this will help you financially at tax time every year moving forward, as well as get you a lump sum now.
I can send you a PM if you would like with the website links to get you going on this.
Scour this forum for what you need to do to turn this around for your husband.Denyse Diffuse Scleroderma
CANADIAN LIVING IN CANADA
Diagnosis/ Diffuse Scleroderma since 05/2006
Current Meds: Methotrexate, Minocin, Zantac, Rabeprozale, Zopiclone
Current Supp: Nattokinase, Serrapeptase, COQ10, Milk Thistle, Folate,, B12, D3, Melissa, UP4 probiotics, N-A-C
medical MJ
Current Extras: FIRMy apologies, I should have read where you are from. CPP and disability tax credit is a Canadian thing. But you should have something similar in the US.
CANADIAN LIVING IN CANADA
Diagnosis/ Diffuse Scleroderma since 05/2006
Current Meds: Methotrexate, Minocin, Zantac, Rabeprozale, Zopiclone
Current Supp: Nattokinase, Serrapeptase, COQ10, Milk Thistle, Folate,, B12, D3, Melissa, UP4 probiotics, N-A-C
medical MJ
Current Extras: FIRHI
Does your husband have a compromised immune system due to transplant therapy or hiv. His eye problem could indicate
a viral infection from a hespavirus. There is a fairly new oral treatment for viral infections that is a godsend.
Cytomegavirus can infect eyes ,veins,arteries.He should have a blood test for viral load of hespavirus. there are six closely
related viruses . The test can be carried out on eye fluids and blood and is not expensive.My wife has a compromised
immune system due to a heart transplant and it took weeks to diagnose because it is rare since HIV immunocompromised
systems are now corrected. Just a thought because without a viral load test you never can be sure.I asked the lung specialist at the hospital today were my husband is and he said if his brochial scope tomorrow is ok he would try to start him on the Minocycline antibiotics. He said sure why not it could help and that it was a cheap antibiotic. So hopefully this will be the case and he can start this therapy.
Hi Lisa – if the lung specialist is willing to presecribe Minocin for your husband and manage his care, I wonder if he’d also be open to consulting with one of the most experienced AP Doctors , Dr S in Iowa? Dr S is retired but does still consult with AP patients and Doctors who are treating patients with an antibiotic protocol. If you are interested, one of the U.S. Volunteers will be happy to send you some details via a Private Message (PM).
I’m glad that people have already given you some options to consider and hope that you do get some help for your husband soon.
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Check into what can help to reduce TGF- Beta’s in the body this is what is felt to cause by some Rheum’s the SD process and helps to curb the cycle.
Losartin AKA Cozaar a BP med. , Statins, Imatinib AKA Gleevec block TGF-BForgot to list a B complex vitamins especially B6 some indication this too helps is indicated in other articles for SD patients but also to lower the TFG- b in the body- http://www.ncbi.nlm.nih.gov/pubmed/7518751
Jill systemic SD
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