A trip to Florida! CFS Clinic (Dr. Klimas)

[girlinthesnow]

Thanks for the tip Koan

:Retro smile:

 

[calzy]

Hi Calzy

Has Dr Nancy helped you alot? She appears very friendly and wonderful on the videos I've seen. It still seems unreal that I am going to her clinic.

If I get to South Beach I will Definitely go to Joe's

She tries her best with what she has in her majic bag. If your starting from no treatment at all, she will be able to relieve your symotims. Again, if xmrv turns out to be something she is your girl.
good luck!

 

[fresh_eyes]

Miami! Yum! Jewish food: bialys, blinzes, and scrambled eggs with lox! Cuban sandwiches! Ropa vieja!

All that plus Nancy K. I'm so envious. Hope to do it myself some day - it's not all that far for me.

 

[girlinthesnow]

report from Dr Klimas' Clinic

I am back. Alot has gone on in this forum in the meantime, I even missed my own birthday .... I meant to give an initial report when I returned but I crashed for weeks and then thought to wait for blood test results but still have none.

Miami was pretty wonderful, I got an appointment more or less straight away,and Hannah,the Clinic Administrator and all-round Enabler organized the two days for me. The office itself has been described elsewhere but the most wonderful part is the people that surround Dr Klimas. They are warm, astonishingly kind, gentle and wise. Dr K made tea for me and Connie, who tortured me with a V02 max stress test took out me to find some lunch. The first day there seemed to be only 2 patients, so huge amounts of time to talk. The next day was without Dr Klimas, only in the clinic on Mondays and Fridays, the clinic functions for tests and admin during the rest of the week. They thought of everything, even giving me a big dose of intravenous saline post V02 to help with the plane journey home that night. The saline was magic, after an hour of drip I was smiling and glowing, felt wonderful. It wore off over the next couple of days but so many mornings I wish I could have another top-up. The nurse practitioner is a tall gentle man with a soft Alabama accent, he took 2 hours or so to read all the reports I had brought and to make a file on a laptop of my symptoms. The conversation with Dr Klimas was over an hour. In all I was in the clinic for 5 hours on the first day and 6 hours on the following day.

The most amazing thing was being listened to (without the 'tapping pencil' that I find in my GP's surgery), even odd symptoms were noted and sometimes explained. It was worth going to be told 'yes you do have ME/CFS' after all. :victory:

On the basis of what Dr K recommended I ordered the following from IHerb in the US:

Jarrow Formulas, Q-absorb Co-Q10, 100 mg, 120 Softgels
Carlson Labs, Cod Liver Oil, Low Vitamin A, 1000 mg, 300 Soft Gels
Heaven Sent Naturals, Sublingual B12 With B6 & Folic Acid, 30 Tablets

For clarification, Dr K did not specify brands but did mention dosages and specifically the sublingual form of B12.
At first the B12 was much too strong and I had overdose symptoms of tingling and numbness in hands and feet and a raging headache. I chopped the pills into pieces and took gradually increasing bits over a week until I got to a quarter pill/day. This seems to be my tolerated dose without symptoms at the moment.
I had already been taking CoQ10 100 mg/day and Omega 3 but different brands of these so haven't noticed any change from these supps.

The nurse practitioner recommended drinking electrolyte energy drinks. I had never considered this but now drink one of these every couple of days, Lucozade in the UK. I have also restarted taking Biomins tablets from Biocare. Minerals and mineral balance seems critical. I used to crave sodium salt but have switched to LOSalt which has potassium in it and the craving has diminished.

The long wait for test results did drag me down for a while. I was given a sheet with CANTAB results at the clinic and made the mistake of working these results out for myself. They were bad, really bad, I am effectively brain damaged. This was depressing, and I mentioned my stupidity to Hannah. She said gently, 'your brain is impaired because you are ill' which helped quite a bit, it would have been terrible to have sat by myself with these results.

All in all a wonderful and terrible experience which I am extremely lucky to have had and which has been essential l for having any sense of progress with this awful disease.

The cost was low considering the time I was given. $700 for the consultation and labs about $2000 plus flights.

I had a phone appointment scheduled for last week but Dr Klimas was in Washington talking to government advisors, everyone wants a piece of her these days, wonderful that they are listening. I joked that she is like a rock star for PWCers which she laughed at but only a little!

I've now got a skype appointment with Dr K in a week so will get blood test results then and will post here.

It's good to be back,

Michelle

 

[gracenote]

Thanks Michelle for letting all of us know about your appointment with Dr. Klimas. I'm glad it went so well.

I look forward to hearing more as the test results come back.

gracenote

 

[richvank]

Hi, Michelle.

I'm glad to hear that your visit to Dr. Klimas's clinic went well. I'm also glad to hear that both sublingual B12 and folic acid were included in her recommended treatments. I feel that I must let you know that folic acid is not the best form of folate to take. Many people's bodies are not able to convert it very well to the biochemically active forms of folate, and it is necessary to have sufficient levels of both the biochemically active B12 (such as the methylcobalamin in the supplement you ordered, or hydroxocobalamin, as in the protocol I have suggested, but not cyanocobalamin) and folate to lift the methylation cycle block in CFS. So you might consider asking Dr. Klimas about either folinic acid, or better yet 5-methyl tetrahydrofolate, which is sold as Metafolin or FolaPro. If she agrees to your making this substitution, and if you have sufficient dosages of both the B12 and the active folate, I think you will be likely to have a better treatment response. I have communicated with Dr. Klimas about my Glutathione Depletion--Methylation Cycle Block hypothesis for CFS for quite a few years, and I'm happy to see that she is recommending an active form of B12 as well as a form of folate, but as I say, an active form of folate would be preferable to folic acid, in my opinion and in my experience.

Best regards,

Rich Van Konynenburg

 

[Frickly]

Thank you so much for this report. It sounds like you are in good hands. I wish there were more doctors like Dr. Klimas. Also, Happy Birthday!

 

[*GG*]

My Dr upon my last visit suggested Folinic Acid, so I looked at some Folic Acid picking up a prescription and asked the Pharmacist at CVS what the difference was? He looked it up and said my Dr (CFS) must have been mistaken because it is usually only prescribed for cancer patients. If I recall correclty? I still need to email my CFS dr about that. Seems like he needs to write me a script? I am willing to try it, I trust him so much, he has helped me a lot and is very supportive. Seems very knowledgable also! Been with him for over 1 year now.

Hi, Michelle.

I'm glad to hear that your visit to Dr. Klimas's clinic went well. I'm also glad to hear that both sublingual B12 and folic acid were included in her recommended treatments. I feel that I must let you know that folic acid is not the best form of folate to take. Many people's bodies are not able to convert it very well to the biochemically active forms of folate, and it is necessary to have sufficient levels of both the biochemically active B12 (such as the methytlcobalamin in the supplement you ordered, or hydroxocobalamin, as in the protocol I have suggested, but not cyanocobalamin) and folate to lift the methylation cycle block in CFS. So you might consider asking Dr. Klimas about either folinic acid, or better yet 5-methyl tetrahydrofolate, which is sold as Metafolin or FolaPro. If she agrees to your making this substitution, and if you have sufficient dosages of both the B12 and the active folate, I think you will be likely to have a better treatment response. I have communicated with Dr. Klimas about my Glutathione Depletion--Methylation Cycle Block hypothesis for CFS for quite a few years, and I'm happy to see that she is recommending an active form of B12 as well as a form of folate, but as I say, an active form of folate would be preferable to folic acid, in my opinion and in my experience.

Best regards,

Rich Van Konynenburg

 

[goldiland]

Girl in the snow,

I've been a patient of Dr. K for close to 10 years... she is an excellent practitioner and has many tricks up her sleeve. Once you get your labs back, it is likely that she will suggest an immunomodulator like immunovir. Most of us have high viral titers, natural killer cell mediated toxicity (low NK activity) and enhanced cytokine activity and the first step is shifting your immune response from TH2 to TH1 (calm down the overworked, overloaded immune response). I will tell you that Klimas approaches this illness very much from the perspective of an immunologist and focuses on your immune system only. She is not going to run other tests on you (i.e scans, endocrine levels, R-Nase L, methylation pathway dysfunction, etc) and she is going to focus only on treatments that have been proven to be effective. She is a highly conservative physician in my experience. I would also get someone else invovled in your care.... Nancy is great when you see her but extraordinarily difficult to get in touch between appointments. You are basically on your own between visits and sometimes that can be very frustrating when you need an answer regarding your protocol. I wish you the best of luck with Dr. K.

 

[MEKoan]

Thank you so much, Michelle, for this wonderful telling of your time at the clinic. The detail with which you wrote was marvelous and I now feel as though I have been there, too. It must have taken a lot of energy to recount but it's a real treat for us.

I'm sorry it was such a mixed experience for you but I suppose it could not have been anything else and, as you say, it is so good to have a consultation which is, even in small measure, a good one.

Please do remember that though your cognition may be impaired, as is mine and that of almost everyone here, it is not a global effect and, even if it was a great deal of effort to write your marvelous post, a woman who was "stupid" could not have done so.

Thanks so much for taking us with you to see "Dr K" and for describing the experience so fully and so well.

I can almost taste the tea!

 

[girlinthesnow]

Thank you everyone for responding to my post. I am often 'here' but not able to respond. The teleconference with Dr K is on Monday, am concentrating on writing a list of intelligent questions to ask her.

Goldiland, your experience has been mine as well, I think she is wonderful but she has many patients and so many people asking for a piece of her.

The idea of the Dadeland Clinic is to spread her compassion and expertise around by training doctors in her methods. During my visit there was an intern sitting in on the interview with the nurse practitioner and with Dr K. Both were answering his questions and training him as they talked to me, ie. when I mentioned an odd symptom such as using my conscious mind to do normally unconscious tasks( putting on shoes) they reinforced what I said when he looked incredulous.

Immunovir is something that she mentioned to me in January but I didn't feel I could ask my GP for this when she has not yet received anything from Dr K. My GP wrote a referral without knowing who Dr K is and with a lot of scepticism. I hope the test results, when they arrive will change this.

 

[goldiland]

Michelle,
Good luck with your videoconference. As an adjunct to whatever therapies she prescribes, I would also ask Dr. Klimas about immpower (it is OTC medicinal mushrooms extract which she has a number of us on... it raises NK cell activity).

 

[hensue]

Please let us know how it goes Michelle. I appreciate you letting us know this much. I am now contemplating going to clinic since I have heard good things and do not live that far.

 

[Misfit Toy]

Hensue,

thank you for this info. You don't seem brain damaged at all. You wrote so well. I looked up Lucozade from Britain. It almost looks like a sports drink which is usually no good. What is this stuff? It reminds me of something that gives instant energy at a cost. I am curious because I like drinks that make you feel good and put boost into your step!

 

[Misfit Toy]

I meant to say thank you girlinthesnow!! THANK YOU!!

 

[richvank]

Folate forms

My Dr upon my last visit suggested Folinic Acid, so I looked at some Folic Acid picking up a prescription and asked the Pharmacist at CVS what the difference was? He looked it up and said my Dr (CFS) must have been mistaken because it is usually only prescribed for cancer patients. If I recall correclty? I still need to email my CFS dr about that. Seems like he needs to write me a script? I am willing to try it, I trust him so much, he has helped me a lot and is very supportive. Seems very knowledgable also! Been with him for over 1 year now.

Hi, ggingues.

This treatment for CFS is relatively new (I suggested it in early 2007) and it is not well known in the medical community yet. I hope it will be someday, and Dr. Nathan and I are giving talks at medical conferences in an effort to get more physicians on board.

It's true that folinic acid (also called leucovorin) has been given by prescription to cancer patients for quite a few years. In fact, when I had rectal cancer several years ago, I was given leucovorin together with 5-fluoruracil. The leucovorin is given to preserve most of the folate metabolism, while the 5-fluorouracil blocks the part that supports making new DNA. The idea is that cancer cells reproduce more rapidly than normal cells, so blocking DNA production affects them more than it does normal cells. But the leucovorin is not a chemotherapy agent. It is used to restore part of the blocking of the folate metabolism that the chemotherapy does.

Nowadays, folinic acid is available also over-the-counter or from several internet suppliers. 5-methyl tetrahydrofolate, the other active, chemically reduced form of folate that is available over-the-counter now is even better to use in CFS treatment than folinic acid, but I recommend using both. Incidentally, 5-methyltetrahydrofolate is also sold as a drug now (actually it's called a "medical food") under the name of Deplin. It is a treatment for depression, but the dosage is much larger than needed to treat CFS.

The problem with folic acid is that it is actually not a form of folate found in nature. It is sold because it has a long shelf life, and fortunately the human body has an enzyme that can convert folic acid into the chemically reduced form tetrahydrofolate, which the body can then use to make the other useful forms of folate. However, different people have different activity for this enzyme, depending on the form they have inherited, and the various ones differ by a factor of 500% in activity for this reaction. So people who inherited a slow form (and I suspect that there are many people with CFS in this category, but it has not been studied yet) are not able to use folic acid very well.

I'm sorry that your pharmacist is not up-to-speed on folates. If your doctor recommended folinic, or better yet 5-methyl tetrahydrofolate, also known as Metafolin or FolaPro, then he (she) is on the right track. Folinic is used a lot in the treatment of autism by the DAN! (Defeat Autism Now!) project doctors, and in my opinion, CFS and autism share the same basic biochemical problem, which is the partial methylation cycle block.

I hope this clears this issue up a little.

Best regards,

Rich

 

[girlinthesnow]

chat with Dr Klimas

I had a chat with Dr Klimas yesterday about my test results
Positive for EB-EA IgG ,actively replicating EBV
Negative HHV6 IgG
3 x normal range Tumor Necrosis Factor
Flow cytometry profiles and panels: extra antiviral cells, T cells 4x normal and shift from naive to memory T cells
Have some functioning NK cells but below the lower range of normal.

The above is from conversation rather than written results.

We discussed a specific antiviral, Valcyte for the EBV, Dr Kerr's clinical trial of monoclone antibodies, embrel, a prescription for pentoxicillin and large dose omega 3. Decided to gradually up my dose of omega 3 to reach 4000-6000 mg/day.

Also to try to get my GP to prescribe Immunovir.

I told her that B12 sublingual appeared to be working, but initially made me feel hyper wound-up like

too much thyroid medicine and liothyronine in particular.

Her explanation was that without the sublingual B12 my cells were hypometabolic and the B12 made

the thyroid meds (more available? more active?) so I probably needed to review my thyroid

prescriptions. In the distant past I had been convinced that much of my M.E. was caused by

insufficient thyroxine/liothyronine(T4,T3) so I tweaked continually and adjusted it to try to control

symptoms as per Dr Lowe's book. This never had any lasting effect. Interesting to me that the

seeming lack of T4,T3 was probably because of changes in my cells rather than in my thyroid gland.

Lastly we talked about BP, I'd recently monitored BP during a crash
95/45 sitting on bed
130/80 after standing for 4 minutes
99/66 after sitting down again for 4 minutes

She suggested drinking something like Gatorade, Lucozade here in the UK, first thing in the morning

and if droopy after lunch have another bottle and continue to measure BP for changes.

Apparently there is a feedback loop between the autonomic nervous system and inflammatory

responses. Haven't had time to look this up.

All good stuff

 

[aquariusgirl]

hi michelle

thanks for the update.

Does she want you to do things in a certain order?
I thought I read on another thread where she wants a patient to start out with Immunovir.. and raise NK cells (or activity ...wasn';t clear to me) before introducing other drugs, .... in this case LDN.

Interesting that she recommended Equilibrant... Dr Chia's txt for enteroviruses.
Has she tested you for enteroviruses?

Thanks
BTW: I love Somerset. Especially in the spring with all the lambs. It's just one of the nicest parts of the country. Where are you, if you feel comfortable saying?

 

[hensue]

Thanks Michelle,
sounds good was waiting for your update! Do you feel good about everything she said? Will your doc prescribe immuunovir? Dr Klimas will not prescribe it? My doc would not help me unless she prescibes the med. Or maybe I am just not understanding.
Tell us every detail ok. How are you feeling?

 

[girlinthesnow]

hi michelle


Does she want you to do things in a certain order?
I thought I read on another thread where she wants a patient to start out with Immunovir.. and raise NK cells (or activity ...wasn';t clear to me) before introducing other drugs, .... in this case LDN.

Interesting that she recommended Equilibrant... Dr Chia's txt for enteroviruses.
Has she tested you for enteroviruses?

Thanks

Hi Aquariusgirl,

Yes, first increase the omega 3 to a dose of 4-6000/day and then do a trial of imunovir.