Comments on: Hypercoagulable State in Fibro & CFS http://www.fibroandfatigue.com/blog/2007/10/17/hypercoagulable-state-in-fibro-cfs/ A blog about Fibromyalgia and Chronic Fatigue Thu, 28 Aug 2008 18:32:42 +0000 http://wordpress.org/?v=2.2.1 By: Lynne http://www.fibroandfatigue.com/blog/2007/10/17/hypercoagulable-state-in-fibro-cfs/#comment-583 Lynne Wed, 02 Apr 2008 18:02:00 +0000 http://www.fibroandfatigue.com/blog/2007/10/17/hypercoagulable-state-in-fibro-cfs/#comment-583 Finally! Your comments about hyper coagulation sounds just like my complaints to my dr. I have a current diagnosis of Chronic myofascial pain, sleep apnea, insomnia and now chronic sinusitis. I currently have not been able to use my CPAP machine as it flares the sinusitis. I am being referred to ENT for June. My complaints have been that my muscles feel like they aren't getting the oxygen. All tests for neuropathy, lyme disease, diabetes, etc, etc, have been reported to me as normal. How do I find out if hyper coagulation is indeed my issue? What tests do I ask for? Finally! Your comments about hyper coagulation sounds just like my complaints to my dr. I have a current diagnosis of Chronic myofascial pain, sleep apnea, insomnia and now chronic sinusitis. I currently have not been able to use my CPAP machine as it flares the sinusitis. I am being referred to ENT for June. My complaints have been that my muscles feel like they aren’t getting the oxygen. All tests for neuropathy, lyme disease, diabetes, etc, etc, have been reported to me as normal. How do I find out if hyper coagulation is indeed my issue? What tests do I ask for?

]]> By: Al http://www.fibroandfatigue.com/blog/2007/10/17/hypercoagulable-state-in-fibro-cfs/#comment-579 Al Sun, 09 Mar 2008 20:23:05 +0000 http://www.fibroandfatigue.com/blog/2007/10/17/hypercoagulable-state-in-fibro-cfs/#comment-579 I had a doctor do a test for hypercoagulation(ISAC Panel) by HEMEX labs in 2001. The SFM was 22 with ref 0-17, CD62P 18 ref 0-18,CD62P + ADP 36 ref 39-80, and plt activation index 1+ . The doctor stated these results indicated a "CHRONIC activation in bone marrow". When I asked him what type of infection it could be he stated HHV-6 but did not want to test me. He started me on heparin and I did have flu like symptoms but then improved dramatically. He stopped the heparin after a short period because I got better and I slowly have declined. I have not felt my health has been anywhere as good since. Does the heparin draw the infection out so it is easier to detect. What process do you take in these situations? Thanks. I had a doctor do a test for hypercoagulation(ISAC Panel) by HEMEX labs in 2001. The SFM was 22 with ref 0-17, CD62P 18 ref 0-18,CD62P + ADP 36 ref 39-80, and plt activation index 1+ . The doctor stated these results indicated a “CHRONIC activation in bone marrow”. When I asked him what type of infection it could be he stated HHV-6 but did not want to test me. He started me on heparin and I did have flu like symptoms but then improved dramatically. He stopped the heparin after a short period because I got better and I slowly have declined. I have not felt my health has been anywhere as good since. Does the heparin draw the infection out so it is easier to detect. What process do you take in these situations? Thanks.

]]> By: Laura Milner http://www.fibroandfatigue.com/blog/2007/10/17/hypercoagulable-state-in-fibro-cfs/#comment-577 Laura Milner Fri, 07 Mar 2008 15:14:08 +0000 http://www.fibroandfatigue.com/blog/2007/10/17/hypercoagulable-state-in-fibro-cfs/#comment-577 In my first visit to F&F Center in Atlanta last month, Dr. Cuddapah explained the Soluble Fibrin Monomer (SFM) problem and gave me a handout to study about hypercoagulable state, CFS/FM, and heparin treatments. I just read online (and heard on NPR's All Things Considered, March 6, 2008) about 19 deaths related to contaminated heparin supplied by Baxter Intntl., plus illnesses in Germany where other suppliers are used. What is F&F Center doing to make sure its heparin supply is safe? I'm scheduled to see Dr. Cuddapah next week and am curious about heparin treatment . . . all I can find online are studies by a laboratory scientist, David Berg, and one physician, Kent Holtorf. Have any controlled studies or clinical trials of heparin for CFS/FM been done or reported in peer-reviewed medical journals? I'd like to read more before I embark on "low dose heparin and substances to break up the fibrin." Thanks! Laura in Statesboro In my first visit to F&F Center in Atlanta last month, Dr. Cuddapah explained the Soluble Fibrin Monomer (SFM) problem and gave me a handout to study about hypercoagulable state, CFS/FM, and heparin treatments. I just read online (and heard on NPR’s All Things Considered, March 6, 2008) about 19 deaths related to contaminated heparin supplied by Baxter Intntl., plus illnesses in Germany where other suppliers are used. What is F&F Center doing to make sure its heparin supply is safe?

I’m scheduled to see Dr. Cuddapah next week and am curious about heparin treatment . . . all I can find online are studies by a laboratory scientist, David Berg, and one physician, Kent Holtorf. Have any controlled studies or clinical trials of heparin for CFS/FM been done or reported in peer-reviewed medical journals? I’d like to read more before I embark on “low dose heparin and substances to break up the fibrin.”

Thanks!

Laura in Statesboro

]]> By: scuddapah http://www.fibroandfatigue.com/blog/2007/10/17/hypercoagulable-state-in-fibro-cfs/#comment-538 scuddapah Fri, 04 Jan 2008 20:50:38 +0000 http://www.fibroandfatigue.com/blog/2007/10/17/hypercoagulable-state-in-fibro-cfs/#comment-538 Chris, Hi, and great question! Factor 5 (+) may play a role; however, many other tests need to be ranto make sure this is what is going on. I would suggest checking d-dimer levels, TAT complex, prothrombin fragment 1.2, fibrinogen, and PAI-1 levels. At that point you should be able to get a clearer picture of what is actually going on. Best of luck! Dr. Cuddapah Chris,

Hi, and great question! Factor 5 (+) may play a role; however, many other tests need to be ranto make sure this is what is going on. I would suggest checking d-dimer levels, TAT complex, prothrombin fragment 1.2, fibrinogen, and PAI-1 levels. At that point you should be able to get a clearer picture of what is actually going on.

Best of luck!

Dr. Cuddapah

]]> By: scuddapah http://www.fibroandfatigue.com/blog/2007/10/17/hypercoagulable-state-in-fibro-cfs/#comment-537 scuddapah Fri, 04 Jan 2008 20:48:52 +0000 http://www.fibroandfatigue.com/blog/2007/10/17/hypercoagulable-state-in-fibro-cfs/#comment-537 Crystal, Thanks for reading my blog on hypercoagulable conditions. Yes, this may very well be a significant root cause to fibromyalgia related symptoms, especially when other modalities such as bioidentical hormones and anti-microbials fail to treat symptoms. It is amazing how many of my patients finally found relief for their symptoms, many who have been able to successfully discontinue narcotic pain medications. Best of luck Dr. Cuddapah Crystal,

Thanks for reading my blog on hypercoagulable conditions. Yes, this may very well be a significant root cause to fibromyalgia related symptoms, especially when other modalities such as bioidentical hormones and anti-microbials fail to treat symptoms. It is amazing how many of my patients finally found relief for their symptoms, many who have been able to successfully discontinue narcotic pain medications.

Best of luck

Dr. Cuddapah

]]> By: scuddapah http://www.fibroandfatigue.com/blog/2007/10/17/hypercoagulable-state-in-fibro-cfs/#comment-536 scuddapah Fri, 04 Jan 2008 20:47:54 +0000 http://www.fibroandfatigue.com/blog/2007/10/17/hypercoagulable-state-in-fibro-cfs/#comment-536 Carrie, It's a possibility that it could be related to Fibromyalgia. Is there a chance the calf pain may be related to a deep venous thrombosis, especially with elevated D-dimer levels? If so, a lower ext. ultrasound would be a preferable diagnositic modality to CT to rule out. If normal, it may very well be related to FM. Keep me posted and good luck! Dr. Cuddapah Carrie,

It’s a possibility that it could be related to Fibromyalgia. Is there a chance the calf pain may be related to a deep venous thrombosis, especially with elevated D-dimer levels? If so, a lower ext. ultrasound would be a preferable diagnositic modality to CT to rule out. If normal, it may very well be related to FM.

Keep me posted and good luck!

Dr. Cuddapah

]]> By: Chris http://www.fibroandfatigue.com/blog/2007/10/17/hypercoagulable-state-in-fibro-cfs/#comment-532 Chris Tue, 01 Jan 2008 15:34:58 +0000 http://www.fibroandfatigue.com/blog/2007/10/17/hypercoagulable-state-in-fibro-cfs/#comment-532 I have CFS and fibromyalgia and am factor 5 positive. What part if any is that playing in my conditions? I have CFS and fibromyalgia and am factor 5 positive. What part if any is that playing in my conditions?

]]> By: Crystal http://www.fibroandfatigue.com/blog/2007/10/17/hypercoagulable-state-in-fibro-cfs/#comment-527 Crystal Sat, 08 Dec 2007 16:38:35 +0000 http://www.fibroandfatigue.com/blog/2007/10/17/hypercoagulable-state-in-fibro-cfs/#comment-527 So good to read this by Dr Cuddapah. There are very few Dr's out there who even know about using Heparin in this way. I have not been put on Heparin yet, but know that it is going to be a good next step for me, as I have Lyme disease and Bartonella, which has also been known to cause coagultation problems. I would be interested to read what Dr Cuddapah thinks about these diseases emerging as the root of many Fibromyalgia and Chronic Fatigue Patients problem. Thank you! So good to read this by Dr Cuddapah. There are very few Dr’s out there who even know about using Heparin in this way. I have not been put on Heparin yet, but know that it is going to be a good next step for me, as I have Lyme disease and Bartonella, which has also been known to cause coagultation problems. I would be interested to read what Dr Cuddapah thinks about these diseases emerging as the root of many Fibromyalgia and Chronic Fatigue Patients problem. Thank you!

]]> By: Carrie http://www.fibroandfatigue.com/blog/2007/10/17/hypercoagulable-state-in-fibro-cfs/#comment-511 Carrie Tue, 06 Nov 2007 08:09:13 +0000 http://www.fibroandfatigue.com/blog/2007/10/17/hypercoagulable-state-in-fibro-cfs/#comment-511 <p>Question - </p> <p>I am a 32yo female diagnosed with FM, and upon recent trip to ER for calf pain of >5 days, found that my d-dimer was 817! CT w contrast showed no significance, which was a relief. Could this be related to my FM?</p> <p>Carrie</p> Question -

I am a 32yo female diagnosed with FM, and upon recent trip to ER for calf pain of >5 days, found that my d-dimer was 817! CT w contrast showed no significance, which was a relief. Could this be related to my FM?

Carrie

]]> By: Sue http://www.fibroandfatigue.com/blog/2007/10/17/hypercoagulable-state-in-fibro-cfs/#comment-359 Sue Thu, 18 Oct 2007 21:50:10 +0000 http://www.fibroandfatigue.com/blog/2007/10/17/hypercoagulable-state-in-fibro-cfs/#comment-359 Many years ago I was told that FM could be "cured" or at least improved by the use of heparin. This info was presented by a local dentist who got the info from a MD in Florida who said the FDA wouldn't get behind him as there wasn't a clear cause for acquiring the disease. I would like to know more on this topic. Where could I find info on this, and FFC offering this type of treatment? Many years ago I was told that FM could be “cured” or at least improved by the use of heparin. This info was presented by a local dentist who got the info from a MD in Florida who said the FDA wouldn’t get behind him as there wasn’t a clear cause for acquiring the disease. I would like to know more on this topic. Where could I find info on this, and FFC offering this type of treatment?

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