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Hello!…I'm sorry it took me so long to post this but I wanted to write something about my recent trip to see Dr. M. in Houston. First off I had been so busy at work it NEVER even occured to me that there wouldn't be a hotel within about 100 miles of Houston due to the evacuees from Hurrican IKE so I DID end up sleeping in my car of all things!……….I thought darn it I wanted to look really good when I see her this time (hair done perfectly, etc., etc.) SO I did the best I could in the parking garage bathroom (just another fiasco to add to my travel adventures I guess)…….I'm not sure if Dr. M. really noticed how well I'm doing at first……until they brought in this little black instrument that looked sort of like a tire gauge. She said they were testing this thing for use in measuring skin scores. They are hoping to teach other doctors how to do this since I guess a lot of drs. don't know how that's done……Anyway after they touched this thing to my arms, hands, and upper and lower legs Dr. M. then says “now I know this is going to be hard but I have to ask you to turn over”…..well I flipped over like I normally would have and I told her “now 6 months ago that would have taken me about 10 minutes to accomplish turning completely over like that and I would have needed your help to do it”….she didn't say much at that point….when all of that was done I started telling her about the many improvements and that I have my life back now and can do pretty much anything I want to and that I feel great and it was then that she seemed to take a closer look……we talked a bit more and then before she left she shook my hand and said “Keep taking your medications Gay”…….I didn't think too much of it until later and it dawned on me that she knows the only thing I'm taking is Minocin….(I also take Lisinopril and Cardia to control blood pressure but why would she be talking about those two medicatons alone when she said that? I wondered at that point if she knows there is benefit to taking Minocin but she can't jump on that bandwagon because of her research…..it's speculation on my part but I did think that was an odd thing for her to say……Oh well…I know this works, we all know it works and we can just keep telling every person, every doctor and every patient that comes our way and lives can be saved by those who listen…..and pray about it non-stop…….I did get more of the nurses time before Dr. M came in and I let her know how I felt about it….I just had to get that off my chest to someone in that office….Blessings and healing to everybody….Gay
I can't believe you slept in your car, Gay?:doh::doh::doh: You are one tough cookie when you're on a mission and I pity anyone who gets in your way. You really took one for the team there. Whew! As part of the sclero gang, I thank you for trying to educate this doctor.
Your trip went about as you expected (except for the car part) :crying:, to try and get the attention of one of the influential nay-sayers,(some would say experts), in this field. Even though you walked in as proof positive that AP turned around a nasty case of SD, sounds like she still had her blinders on. Too bad. Too bad when doctors are more into their new gizmos and drugs and can't see what's right before them. I just have to think you left an impression, even if she wouldn't give you the satisfaction of acknowledgment, or even say, “well done.” Too bad for her patients that are counting on her. Too bad. Too bad.
Well, someone is listening to you. My sister saw Dr. K. last week and loved her, thanks to your supportive recommendations. Your kind e-mails to her sealed the deal as far as the best treatment for SD and where to go to get it. For that, we will both be forever grateful. We were on such a high last week because it went so well, but already have hit the first bump in the road. Dr. K. started her on Mino and she immediately got sick with pneumonia. I have to wonder if this isn't a big ole herx from a bacterial infection in her lungs? Geez!!! She'll see a local doc and have more tests today.
All I can say, Gay, is GOOD ON YOU!
Hugs…..kim
[user=40]Kim[/user] wrote:
….My sister saw Dr. K. last week and loved her, thanks to your supportive recommendations. Your kind e-mails to her sealed the deal as far as the best treatment for SD and where to go to get it. For that, we will both be forever grateful. We were on such a high last week because it went so well, but already have hit the first bump in the road. Dr. K. started her on Mino and she immediately got sick with pneumonia. I have to wonder if this isn't a big ole herx from a bacterial infection in her lungs?
Kim,
The exact thing happened to me when I first had IVs and then started on MWF Minocin.
I'm as positive as I can be that in my case this was a herx, with the die-off pooling in my chest and becoming pneumonia. Dr. S in Ia. had a myco lab panel done a month before when I first saw him, and m. pneumoniae was one of the two I had. I'm sure that rascal got its name because it likes the lungs, don't you think? (Also, the local hospital x-ray said it was “atypical pneumonia.” I then learned that another name for this is “mycoplasma pneumonia” or “walking pneumonia.”
Anyway, I called Dr. S and told him about the pneu. and he told me to stop the Minocin and follow the local treatment for the pneumonia; and, when it was resolved, to get right back on the Minocin. Kim, I felt this die-off needed to happen for me to get better. And, get better I did. Right after the pneumonia cleared, I was up and about and feeling better than I had felt in a very, very long time. And 3 or 4 months later, besides feeling so much better, I got the use of my left arm back and could open doors using the left hand, and could raise my left arm and finally shampoo and tend to my hair.
Keep the faith…. sounds like progress to me!
AF
[user=40]Kim[/user] wrote:
We were on such a high last week because it went so well, but already have hit the first bump in the road. Dr. K. started her on Mino and she immediately got sick with pneumonia. I have to wonder if this isn't a big ole herx from a bacterial infection in her lungs?
Kim, is it possible she has babesia, as a coinfection? Could very well be a herx…but thank God she wasn't on immunosuppressive therapy!
Peace, Maz
PS Just saw AF's suggestion, too. Very well could be Myco Pneumoniae, chlamydia pneumoniae and or/babs. A month after my Lyme rash, I had the worst chest infection of my life. It actually worsened when I started doxy for Lyme and no doubt was a herx.
Well Miss Gay… You are one of the adventuresomest girls I have ever seen! I am very glad that you survived the living in the car issue.
Best wishes and keep being the shining example of a tremendous turn around. Being a results oriented guy, that is what speaks to me.
Dave
[user=27]Maz[/user] wrote:
Kim, is it possible she has babesia, as a coinfection? Could very well be a herx…but thank God she wasn't on immunosuppressive therapy!
Peace, Maz
PS Just saw AF's suggestion, too. Very well could be Myco Pneumoniae, chlamydia pneumoniae and or/babs. A month after my Lyme rash, I had the worst chest infection of my life. It actually worsened when I started doxy for Lyme and no doubt was a herx.
They admitted her to the hospital today because her blood pressure dropped so drastically and the chest pain was too much to handle. Guess it's better to have a supervised herx, as sick as she is. I asked her to please try and find out the particular infection, if at all possible. I really feel awful about this.
Thanks to you both and I'll keep you posted…..kim
Oh Kim…can only imagine how you feel, but try to keep the faith. Just imagine how awful this might be if her immune system was compromised in some way with immunosuppressive therapy. Hopefully, as you say, they will figure out the organism causing this massive herx and she'll be through the worst in no time. It's just too uncannily synchronous, just as she starts treatment, that this has sprung up.
You're both in my thoughts and prayers.
Peace, Maz
Im new here so I hope you don't mind me offering my two cents lol. I totally agree with you that it is very sad that some drs care more about their gadgets or money than truly trying to help people. Once I am better I am going to finish my degree to become a naturopath so that I can help people in any way that I can! I think that it is awesome that you showed that dr she was wrong. I think that they need to see more patients like that lol as someone who is new to the whole scleroderma thing it is exciting to read stories like this!
Wonderful news Gay and great that your doc seems now to be supportive.
Kim – this must be very hard for you and I hope things resolve quickly for her. It does sound like a mega herx for which the extreme symptoms do require treating. Any chance of someone putting in an urgent call to Dr K to get her perspective on this? Lynnie
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)[user=30]lynnie_sydney[/user] wrote:
Kim – this must be very hard for you and I hope things resolve quickly for her. It does sound like a mega herx for which the extreme symptoms do require treating. Any chance of someone putting in an urgent call to Dr K to get her perspective on this? Lynnie
I gotta admit, this is wearing me out. She wound up in the ER again yesterday for severe chest pain following a PFT. The EKG looked fine so they sent her home loaded on pain meds. Geez! She must have a ton of bacteria in her lungs to elicit a herx every single time things get stirred up.
Problems arise when you get too many doctors involved, which is a problem for her. Dr. K. is wonderful, but 6 hrs. away, so she needs to have some local involvement. Unfortunately, the locals don't have a clue about AP. Familiar story, I know. Hopefully, she can start leaning on Dr. K. more for the incidentals between visits. I, for one, would be much more comfortable having her call the shots than this tag-team circus we have now.
She is in the south and I'm in Indiana, so I'm not able to help as much as I'd like. Another family drama concerns my Dad. I'm so convinced he has undiagnosed Lyme and not the Parkinson's that he's being treated for, that I begged him to be tested — the right way. I ordered the Igenex test kit and had it sent to his house, which has to be signed off by a doctor. He went all over New Orleans and doctor after doctor refused to sign off — wanting nothing to do with Lyme, of course. Finally, after weeks of this insanity a doctor agreed to do it and the blood should be at the lab now being tested. This is how sure I am — without even knowing the results, we already have an appointment booked with a Lyme specialist in December. 😉 I hope I'm not wrong on this, because at least then he can be treated for something specific and taken off these awful Parkinson's meds that do nothing and make him feel awful.
My poor little Lyme-brain is being pushed to the limit because the large doses of abx I'm on has me herxing and feeling rather dopey. I need to go back to Chicago for more baby therapy with the grandchildren — 3 yr olds enjoy dopey! :roll-laugh:
Ah gosh Kim. Please take care of yourself. Lynnie
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)
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