My specific instructions from Dr C

Discussion in 'Lyme Disease Archives' started by munch1958, Apr 23, 2007.

  1. munch1958

    munch1958 Member

    This is ALL in addition to the ABX/yeast regimen. I will summarize this and post.

    1) Vitamin D: 5,000 IU Vitamin D3 per day
    Get a tan Oct - March. Use a UVB & UVA tanning bed 1-3
    days per week.

    There is some evidence that people with Lyme herx in
    the sun. Bb does not like sunlight. That's what the headache and bloated feeling that I used to get outdoors was all about.

    I got a vitamin D panel done through FFC and my normals were on the low side. In spite of my history of sarcoidosis I went on Vitamin D3 last year. I had a mild herx from it.

    I know the Marshall Protocol works for some but based on my levels it's not for me. I feel better in sunlight and worse on cloudy days.

    The FWIW protocol suggests 4,000 IU of Vitamin D3. I had good success with this in the past.

    2) Hydrochloric acid protocol:
    Quantum Betaine HCL: 15 caps 3X a day in the middle or
    end of meals for 30 days.
    HCL Activator: 3 caps 3X per day for 30 days.

    Avoid laying down after meals. Sit upright and do not slouch. Drink water for upset stomach.

    In a hypercoagulation lecture in the fall of 2006, one of the doctors presented evidence that he cured over 100 Bb patients with high doses of HCL.

    I'm not going to be able to try this since I'm allergic to beets and have had a Nissen Fundoplication (esophagus wrapped around the stomach) for GERD.

    3) Bb destroys jawbone. See a dentist with a Cavitat
    dental ultrasound machine.

    I just had my amalgams removed a few weeks ago. I'm hoping this will clear up my candida infection. I don't see much point in finding out if I have ostonecrosis (bone death) in my jawbone. The surgery to fix each cavitation costs $1-2K per cavitation. I've had 8 root canals and my impacted wisdom teeth removed.

    If anything I may go get the ultrasound if it's not too expensive then try an EMPI unit because there is some evidence that rhythmical frequencies ($800 for the unit) may heal the dead jaw bone. I don't know if this is the same as a RIFE machine.

    4) B12 shots and L-Tyrosine for fatigue.

    I'm allergic to corn so I can't do the shots. I've had good results with oral B12. My B12 levels were very low at FFC. I did not see the need to use shots or sublingual after reading an online paper on B12 by a Family Practice doctor.

    I just started L-tyrosine about 2 weeks ago. This is supposed to be taken on an empty stomach. It sure does get confusing trying to find a time to do T3 and aminos. Iron needs to be taken on an empty stomach too.

    5) Stay on the Buhner herb protocol.

    I'm taking the Zithromax in the morning and the herbs with lunch and dinner. I've worked my way up to two capsules of Raintree Cat's Claw 2X per day. One tablet of Revesterol and one tablet of andrographis. One of these herbs is very bitter.

    I'm taking 4-6 capsules of Nature's Way Smilex (sasparilla) for herxing along with some molybdenum.

    6) 200 mg Diflucan 1X.
    500000 UNITS 2-4 tabs qid for 3 weeks then 4 tabs qd
    of Nystatin while on ABX

    I'm waiting for Nystatin to arrive in the mail. The FFC prescribed 3 tabs 3X per day which I always thought was too low of a dose. In the past, my wholistic doctor gave me 3 tabs 3X. I followed the FFC protocol for a year and still have high IgM, IgG and IgA titers.
    [This Message was Edited on 06/08/2007]
  2. mollystwin

    mollystwin New Member

    Your doctor actually prescribed a tan? And the sun causes a herx? Wow this would explain why I crash evertime I sit in the sun!!!

    Very interesting.
  3. munch1958

    munch1958 Member

    5,000 iu of Vitamin D is a high dose. I used to tan as a kid but that changed into burning and peeling cycle. Last year I started 2,000 iu Vitamin D and started tanning again.

    I've been trying to figure out why I feel so awful in the sun for YEARS. Last summer was the first time I've enjoyed being outdoors. I think it was due to the ABX therapy.

    I found this article on herxing. It does say to get plenty of sunshine:

    Dr C mentioned this was new info just becoming available about Lyme. It's the opposite of the Marshall Protocol which requires covering your windows and wearing special sun glasses 24/7. I can't live in a cave.

    I finished the 24 hour hormone urine test this morning. It's supposed to give 21 hormone results including growth hormone. I got a jug in the kit that holds 4,000 ml of liquid. The test kit says most people don't excrete this much urine in a day.

    I knew I should have asked for second jug. I filled that up and had another 1/2 gallon of pee in an empty milk jug for a total of 6,500 ml. I exercised yesterday and had something salty to eat.

    I've got a huge problem with a dry mouth and thirst. It's not diabetes since my blood sugar is always normal. I hope this test can give me some answers. I've had a lot of trouble with hypertension and bloating but can't take diuretics since I'm allergic to HCTZ and may have polycythemia vera.

    I think it's got something to do with aldosterone or lack of vasopressin being produced by the HPA axis. My level of aldosterone was found to be high at FFC. They didn't do any deeper digging into this problem other than to say lots of people with fibro have a dry mouth.

    My next priority for testing is the MOCHA infection panel (hypercoagulation) by Hemex Labs. Dr. C says they have tested 1,000 Bb patients and 90% have abnormal test results vs. only 5% of healthy people having abnormal results. Cost is $366 and results take 2 weeks.

    I got very sick on Lumbrokinase. My fibrin was normal but I had high homocysteine and cardio CRP levels. Treatment is herparin with an 80% response rate. Heparin is used for:

    #1 pain,
    #2 fatigue,
    #3 cognitive problems such as memory loss or depression,
    #4 neurological problems.

    A second hypercoagulation panel is the hereditary or genetic test with a cost of $390. Results are ready in 2 weeks. Genetic abnormalities can't be changed but the risks of hereditary defects manifesting as blood clots or reduced blood flow can be managed.

    I may do the testing for toxins ($130) since many Bb patients have high levels of heavy metals.[This Message was Edited on 04/24/2007]
  4. jarjar

    jarjar New Member

    I use to find myself crash in the sun also it made me want to go curl up and take a nap. You might want to have your Vita D 1.25 levels checked and your regular Vita D level also. The Marshall Protocol talks about healthy levels on their site.

    You may not be ready for the MP but its the only thing that has worked for me.

    The MP is evolving and it is not as strict as it use to to be. I just wear long sleeve shirts and Bolle 100 sunglasses and put on Coppertone Spectra and go on about my life. I should mention I wear a hat when going out in the sun also. I don't live in a cave but I keep my computer dimmer and my T.V. dimmer instead of wearing sunglasses indoors.

    Munch what is HCL that the Doc used that 100 patients responded to?

    I use to see Dr. C but stopped going as I went downhill after he suggested I get off the MP and take what he suggested. Once he found out that I was going downhill he said he would put me back on the MP as he has had a prior patient recover on the MP.
    But it was way less expensive and closer to home to see my regular doc for the MP.
    I do think he is a great doc.
  5. munch1958

    munch1958 Member

    I have seen HCL sold in health food stores and online as an alternative to the purple pill. Holistic docs say that GERD is caused by too little stomach acid rather than too much.

    I tried HCL before resorting to GERD surgery...thought I was going to die. I did not get the activator. I did not research this since I'm allergic to beets. I have no idea on the science behind it for killing Bb.

    Dr. C and I discussed the MP at great length. He's had several patients get better on this. I have biopsy proven pulmonary sarcoidosis so he wanted to throw it out as an option.

    Is there supposed to be a ratio between the two different vitamin D measurements for the MP? The FFC drew a vitamin D panel. My results were:

    1,25-dihydroxy 31
    25-hydroxy 32

    One of my doctors suggested 2,000 IU Vitamin D3 per day. The FFC agreed with this approach since it was on the low side. Another doc said to lower it to 1,000 IU. Yet another said to raise it to 4,000 IU. Dr C said to go to 5,000 IU. I have not had this rechecked. I do herx on it!
  6. jarjar

    jarjar New Member

    It has been so long since I read up on all the MP diagnosis material that I don't even remember all the stuff.
    I do know they were big on using Quest to measure Vit. D 1.25 and it can fluctuate widely.

    My first 1.25 was around 36 and around a year later it was 48 best of my memory but I had been off the MP when those last test were taken. The important thing was bringing down my Vit D levels so the 1.25 would fall in the normal range eventually.

    If you eveer find yourself slowly getting worse, which you may not. You might want to give the MP a look especially since you are dealing with Sarc..
    [This Message was Edited on 05/03/2007]
  7. grace54

    grace54 New Member

    The more I study Lyme I can see more and more symptoms I have had over the years. I recall a couple years ago I was working on a project out in the sun and after about an hour I got so weak that I had to go lay down and I felt exhausted and fell asleep for an hour or so. I really felt like I was having a stroke or heart attack but the symptoms were different. Since then I have been careful when I am outside as I like the sun.So many times with these DD's I felt like I should call 911. Some of these symptoms are scarey. They say fibro'fatigue stuff wont kill you but sometimes it feels like it.
  8. jarjar

    jarjar New Member

    If the sun affects you that way I can almost promise you that your are dealing with TH inflamation. You should go read up on the Marshall Protocol sometime when you have extra time.
  9. grace54

    grace54 New Member

    What is Th inflamation? I will check out the Marshal protocol Thanks for the info:)
  10. jarjar

    jarjar New Member

    The MP site can explain it easier then I can. It will give you more insight then me writing a small paragraph about it. Sometime when you have some spare time check it out. My doc combines Ambrotose with the MP and I am very pleased witht the results.
  11. jarjar

    jarjar New Member

    Excess of active form of vitamin D (1,25 D) linked to chronic fatigue syndrome,
    Lyme disease, fibromyalgia and autoimmune illnesses

    by J. C. Waterhouse, Ph.D.

    Recent research shows that the active form of the vitamin D hormone (1,25 D) is present in excessive levels relative to the inactive 25 D form in patients diagnosed with a number of inflammatory illnesses, such as certain autoimmune illnesses, chronic fatigue syndrome, fibromyalgia and Lyme disease. Evidence suggests that this is due to unregulated production of 1,25 vitamin D by macrophages in the course of an excessive TH1 immune response. Research indicates that this occurs in response to cell wall deficient forms of bacteria parasitizing immune cells and other tissue.

    To ensure accurate results for 1,25 D in the serum, laboratories must freeze the sample for transport and not all labs currently do so.

    In healthy people with a normally functioning immune system, the kidneys regulate the amount of conversion of the inactive form of vitamin D (25 D) into the active form (1,25 D), producing whatever amount of the active form the body needs. However, as has been shown in recent research ( 2, 5, 6), several chronic illnesses show evidence of excessive activity of TH1 immune function leading to an overabundance of 1,25 vitamin D produced by immune cells, such as macrophages. This occurs because, as part of the TH1 inflammatory response, activated macrophages convert 25 D to the 1,25 D form (2, 4). For example, in research on sarcoidosis, Marshall et al (4) have found an elevated ratio of 1,25 D to 25 D (D ratio),

    The above patterns have been missed previously because there have been a number of problems with vitamin D testing. The most important problem is that most studies have only measured the inactive form of vitamin D (25 D). This tends to reflect the intake of vitamin D and thus largely misses the role of processes that cause dysregulation of the 1,25 vitamin D hormone levels, such as the conversion of 25 D to 1,25 D by macrophages. Also, since the active form of vitamin D (1,25 D) tends to degrade easily, it requires that the sample be frozen for transport, and not all labs do this.

    ……………………………………………………………………….. In addition, many of the estimates of serum levels of 25 D may be misleadingly low, since the inflammation from TH1 activity leads to conversion of the inactive 25 D form to the active 1,25 D form, often depleting serum levels of the measured inactive vitamin D (25 D) in order to increase active vitamin D (1,25 D).

    Need for More Study of Active Vitamin D (1,25 D) Levels: Multiple Sclerosis and Other Diseases

    …………………………….There has been a growing movement to routinely recommend increased vitamin D supplementation and sun exposure based on the results of studies of levels of the inactive form of vitamin D (25 D)………………………..

    These studies, especially in higher latitudes, may truly reflect vitamin D deficiencies in many people (3)

    . …………………………………..In most people, the kidneys regulate the conversion of 25 D to 1,25 D, so, in the past, many doctors and researchers have concluded that there is no need to measure the 1,25 D form. However, this view is contrary to the U.S. FDA’s recommendations for studies of osteoporotic therapies to include testing of the 1,25 D form (14). It would seem wise to also apply this more thorough level of testing to other diseases that may involve vitamin D,…………………….. considering the recently widening understanding of its important immune system functions.

    ………………………It is also important to note that any short term benefit of vitamin D in autoimmune illness may be the result of a phenomenon observed in sarcoidosis patients, who sometimes seem to improve for a period of time when vitamin D is elevated, only to relapse later. This is thought to be due to immunosuppressive effects of higher levels of active vitamin D that lead, over time, to increased levels of CWD bacteria, which cause a worsening of the illness (see reference 17 and below). Also, an approach that has succeeded in achieving remission in more than 90% of sarcoidosis patients has included minimizing vitamin D exposure (2, 5).

    ************** ……………………………To illustrate the potential problems with supplementing vitamin D based on the levels of the inactive form of vitamin D (25 D) alone, I will present a brief example of a person disabled with chronic fatigue syndrome and fibromyalgia for 18 years and later diagnosed with chronic Lyme disease. Vitamin D testing revealed a borderline low level of the inactive 25 D form of vitamin D (11 mg/ml) despite moderate supplementation (500 IU/d), which might have prompted a recommendation to increase vitamin D intake. However, this patient was actually suffering from vitamin D intoxication, since the level of 1,25 D, the active form, was at 64 pg/ml, well above the Merck Manual upper limit of 45 pg/ml (8).

    This level was high enough to potentially decrease bone mineral density (6). Over a period of several weeks of minimizing vitamin D intake and avoiding sun exposure, many of the symptoms of hypervitaminosis D improved significantly (including fatigue, weakness and cognitive problems). ……………….Apparently, the 25 D form was low, not because of too low an intake, but because it was vigorously being converted by active macrophages into excessive levels of the active 1,25 D form.

    **********………….. show that many patients with a variety of inflammatory illnesses show a similar pattern of elevated active vitamin D and/or an elevated D ratio. It seems to this author, that it might be wise for anyone with a chronic inflammatory illness to keep their vitamin D from food, supplements and sun to a moderate level (e.g., 200-400 IU) until they can get both

    ***************their 25 D and 1,25 vitamin D levels properly tested at a lab that freezes the sample for transport (e.g., Quest Labs).

    This might also apply to those who have symptoms of hypervitaminosis D, which include: fatigue, weakness, mood changes, insomnia, inability to concentrate, sleepiness, irritability, feeling of intoxication, metallic taste, difficulty swallowing, muscle and joint pains and a number of other symptoms (9). ……………..

    In assessing changes in vitamin D intake, it should be remembered that the inactive 25 D form of vitamin D is stored in fat tissue and has a half life of 1-2 months, thus any effects of vitamin D reduction may take weeks to appear. Experience has shown (4, 5) that the higher the 25 D level, the more it fuels the conversion to the active 1,25 D form by the unregulated macrophages in inflamed tissue. Finally, until much more research is done on both active and inactive forms of vitamin D and their role in inflammatory diseases, it seems advisable that any deviation from a moderate average vitamin D intake or, more precisely, a moderate level of active 1,25 D, should proceed only with great caution. And for those illnesses that are similar to sarcoidosis in patterns of vitamin D levels, it may be that one must temporarily minimize vitamin D ingestion and sun exposure in order to reduce an elevated 1,25 D level to a moderate level and thus achieve improvement in symptoms (4, 5 and above example of CFS/FM/Lyme patient).