Lyme questions

[hopefulmama]

Well, today I got my first “official” diagnosis.  Saw the LLMD here in my town (the only one!) and they said the IgeneX test coupled with my symptoms are a clear positive.  She suggested doing a provocation to find co-infections, suspecting babesia as a main target.  The provocation suggested would include taking grapefruit seed extract, artemisinin (sp?) and azithromycin over the course of two weeks, then having IgeneX run specific tests for babesia and bartonella.

Already I feel in over my head.  I had completely accepted the AP with low dose minocin or doxy over the course of years – I felt, ok, low dose, less risk of bad reaction.  The amount they give to teens with acne.  Totally doable.

Lyme is a totally different universe, it sounds like the treatment is hard and heavy.  I am terrified.  My body is hypersensitive to many drugs and I am still trying to recover from the cortrosyn shot earlier this week.  My acupuncturist today told me he thought I should be very cautious about Lyme treatment because of the incredible sensitivity.  He said any doctor that hasn't seen it for themselves (which he has, many times) could not understand just how reactive my system is.

My gut instinct on all this is to keep that appt at Dr. H's office in the Bay Area to get a second opinion about everything – both the lyme and the treatment protocol.  I also really want to hear what Dr. F has to say when I see him in 1 wk.  But the LLMD here in my town is covered by our health insurance and is also only a 35 minute drive from my house, as opposed to a 9 hour drive away. 

Help!  Are there other ways of dealing with Lyme beyond heavy antibiotics and antimalarials?  Has anyone visited with Dr. K in Washington state?  I think I read he treats Lyme without antibiotics. 

Also, if you have actually seen Dr. H or Dr. Y (in California) could you please PM me and let me know your frank opinion of both.  I have really appreciated the messages from Nancy and Parisa who I believe have had experience with these drs and their protocols.

Got a call from the endocrinologist re: results from the ACTH today and she said to call back Monday (“it's not urgent”) … I am really hoping that one test will be normal, because the treatment for Addisons is steroids – and Dr. Y's office today told me in no uncertain terms that steroids are contraindicated in people with Lyme. 

Is it pathetic that I have spent the afternoon wishing desperately to go back in time 10 years (or maybe 9, because that was the year I met my husband) and get back to being the person I used to be?  I was so healthy and so young.  I feel about 100 years old tonight.

Thanks for any/all advice.  And, if you have been dx with Lyme, could you let me know if you are doing better on abx?   Thanks again.

[spacehoppa]

Hi Hopeful mama,

I'm so sorry about the Lyme diagnosis, but so glad you got diagnosed. It will be the key to getting you well again.

I too was terrified of the three antibiotic protocol as I'd herxed badly on just minocycline alone. But I promise you it is worth the effort.

Funnily enough, I think it is still the minocycline that makes me herx badly. The other two, clarithromycin and hydroxychloroquine seem to make me feel like superwoman and I felt a hundred times better the very second day I took them!

Having said that, it's so hard to know for sure what's making me herx, given that I take all three every day.

The herxes can be very strong, and at times quite frightening, but it's knowing what is coming and having the support of this board and your family that will get you through.

I can't repeat this enough – it IS WORTH IT! My CRP (inflammation marker) came down from 134 last July to less than 1 this July. I feel completely transformed. I am still herxing, a year later, but a lot less than I was. I have found that the things that have helped the most have been cutting sugar (and in my case milk) out of my diet and taking lots of probiotics. I was really only able to get my eating right in the last 3 months as I have had the energy needed to 'care enough' about myself to make a decision to avoid sugar and stick to it. So, be gentle with yourself. It won't all come right at once, but it will come in the end.

Personally I would say to get the treatment, despite your fears and reservations. You can always tweak as you go along.

Pleas see my Youtube videos charting my progress (http://www.youtube.com/user/ruthheasman ). They're longwinded and a bit dull, but might be helpful as a reference for when you begin herxing and wonder what the h*ll is happening to you 😀 .

Let us know how you get on. We're all rooting for you!

[SandiS]

I don't have a lyme diagnois but my doctor wanted to add zith to my protocol. I was nervous because I also don't do well with most antibotics. However adding the zith (250 mg every 10 days) was the best thing I ever did. I was doing well on the minocin but this just seemed to be the little boost I needed. I know your protocol will be much harsher but I too believe it will be worth it.  My husband has a favorite saying for whenever we are going through a rough patch ” just think about where you will be a month from now, two months etc. “. In the last year and a half I have gradually gotten my old life back and you will too.

Sandi

[JBJBJB]

It seemed like yesterday I went through the same thing like you are going through. It's very overwhelming.

First, you need to take a deep breath and don't make any decision and don't think too far ahead.

Then do your research. Here is the old link, perhaps you can find some helpful suggestions.

http://rbfbb.org/view_topic.php?id=3547&forum_id=1

JB

 

 

 

[Cheryl F]

hopefullmomma:

While I do believe that it is a good thing to “know your enemy” I understand that it is overwhelming.  The protocols of LLMDs vary widely and you must convince your local LLMD of your individual situation of having a tendancy of being hyper sensitive.  I have a dear friend, a woman who is one of the corner stones of Road Back for the past nearly 20 years, she has always been hyper sensitive.  She did AP on 25mg of mino MWF, and she got better.  She developed Lyme two years ago, and has had to do a very low and slow Lyme treatment.  Your treatment must be individualized.

Personally, my opinion (for whatever that is worth), if you have advancing syptoms that look like scleroderma, I would want to consult with both an LLMD and a rheumatologist.  The LLMD more for the treatment, or Dr. F for AP, and then you also need to continue to be followed for the diagnostics to watch your internal organs while the treatment is give time to work.

Cheryl

[tcregon]

Well I haven't had that test – yet but feel I need to get it as I always have felt my RA has come from a tick form as I live in a wildlife refuge and my hubby and dogs have had it.  I have always tested negative last one being western blot a few weeks ago.  Anyway, I'm wishing you the best and please keep us posted.

[hopefulmama]

Hi everyone,

Today I found out that I have primary adrenal insufficiency.  I don't know if this is straight Addison's disease or merely really severe adrenal fatigue.

The problem, and it is a big one, is that the treatment for Addison's or adrenal insufficiency is steroids to replace what my own adrenals are not making.

The LLMD I saw yesterday said strongly that steroids are contraindicated with people that have Lyme.

I'm trapped!  If I don't treat the Addison's it could be fatal but if I do treat the Addison's, it could be fatal too – just my reaction to that one shot of Cortrosyn alone is cautionary for me.

Really feel like weeping right now.  I gave a call to T at Dr. Y's office and am hoping she will call back this afternoon, I am so lost and need a strong team to get me through.

My naturopath and acupuncturist are both cautioning very strongly against treating anything too aggressively since my body is so sensitive and weak.   And, the LLMD says to go back gluten and dairy free.  But my allergist says I have a true allergy to soy, rice and nuts.  So, am not left with much to eat then. 

This is a moment when it does not feel like everything is ever going to be okay.

Thanks for all the support and kind encouragement you gave me since my dx with Lyme yesterday (and for all the kindness every single day).  I thought I was brave enough to deal with a connective tissue disease and AP.  Addison's and Lyme never crossed my mind.

[Noel]

Hi hopefulmama,

You have to understand that none of us are doctors so you should always check with your GP however as I see it there is no reason under your circumstances why you cannot take for example prednisone or prednisalone while taking antibiotics.

It?s not ideal some may say because it suppresses the immune system and it kind of goes against the grain in that that?s the last thing you want to do when fighting infection.

However if your immune system is not being regulated naturally then your immune system is going to go to town and create masses of inflammation, so the antibiotics are not going to work anyway be cause they won?t reach their target.

I take low dose prednisone which has worked wonders reducing pain and inflammation thereby allowing the antibiotics to work more effectively. So in short I?m getting considerable relief from pain and I?m still killing the infection. The treatment may take a little longer but you have to be able to function too.

[hopefulmama]

Thank you Noel.  That is truly encouraging.  I hope when I see Dr. F (the rheumy in Riverside) for the first time next week, he will have seen this before and be able to give me concrete advice about how to approach it. 

It helps me to know that you are taking both steroids and abx and getting better.  My feeling is that I have to get the adrenals straightened out before I go on any meds because as you say, the abx won't reach their target or help me if my hormones are not doing their job.

I also have a call in to the LLMD I saw yesterday… anxiously awaiting their response!

Thank you so much for your friendship and help.
Andrea

[Trudi]

[user=2523]hopefulmama[/user] wrote:

It helps me to know that you are taking both steroids and abx and getting better. 

Hi Andrea–

Spacehoppa (Ruth) is also taking both and doing great.

Take care,

Trudi

Lyme/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?

[hopefulmama]

Thank you, Trudi.

I grew even more discouraged this afternoon when I called the office of the LLMD I saw yesterday and the PA said to her knowledge only 1 of their patients is taking steroids and that she did not know what to recommend.  The MD is out of the office for the next few weeks and so I am basically on my own.

The good news, is that I called up to Dr. H (LLMD) in Redwood City and one of his nurses called me with telephone numbers for two bay area endocrinologists who are experienced at treating adrenals concurrent with Lyme.  I made an appt for the day before my appt at Dr. H's office.  Unfortunately they do not take our insurance 🙁  But perhaps if they can at least get me on treatment, it will be a start. 

Got to keep my chin up for my kids.  Whatever I have to do will be worth it.

Thanks again,
Andrea

[Trudi]

[user=2523]hopefulmama[/user] wrote:

…the PA said to her knowledge only 1 of their patients is taking steroids and that she did not know what to recommend. 

Andrea–

There are more people on the board who are also on steroids–I just don't know them as well as I know Ruth's situation.  Dr. Brown did not hesitate to use low-dose prednisone when needed. 

I will keep you in my prayers.  You are going through an awful lot and my heart goes out to you.

Take care,

Trudi

Lyme/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?

[eann]

Hi, I just wanted to let you know that adrenal insufficiency and Lyme disease can be treated at the same time. They use bioidentical hormone supplements, Cortef/Hydrocortisone.

These are different than Prednisone, as they only last a short time in the body and mimic the natural production of steroids that your body is not producing. Taking the Cortef only replaces what your body is missing, so they do not suppress the immune system.

I have similar problems and my LLMD prescribes the Cortef. Your doctor, of course, is the best one to advise you. Chronic disease rarely comes with easy solutions. It is very complicated.

I wish you the best in figuring out all the pieces of the puzzle.
Ann

[nspiker]

Andrea,

I have to echo eann's response.  Lyme often messes with your endocrine system and hormones.  It is common for your adrenals to be shot with lyme and it's co-infections.

Cortef is prescribed if your adrenals are completely shut down, but often you can boost your adrenals with supplemental adrenal support products. 

Info on Cortef:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000611

Info on an adrenal supplement product:
http://www.biomatrixone.com/support_adrenals.html

nancy

[pinkhorses]

Andrea,

This is my first post, I am a little shy but I do have some info that might be helpful to you. 

I am sorry you are having so many problems, my heart goes out to you.  I hope I can give you some info that will make things less stressful. 

I have no adrenal glands (I had to have them removed).  LIke Ann,  I take Hydrocortisone (Cortef), it has a half life of about 6 hours, this allows me to get to a physiologic dose throughout the day that is more like the body's natural production, more in the morning and less at night.  I dose three times a day.

When you are at a physiologic dose, you do not see the same problems that you would with high dose prednisone:).  Just as with the body's natural production, You will not get any relief from Autoimmune conditions at a physiologic dose:(.

Prednisone and Dexamethasone are more long acting and for me have more side effects.  So ask your doctor about taking a physiologic dose of hydrocortisone. 

Dr. S in Iowa has said that I can benefit from AP even while on hydrocortisone.   I have a few autoimmune disorders as well as endocrine issues (not sure about Lyme yet).  

I am sorry to inform you that it is difficult to find an endo that understands serious adrenal issues.  It is very important that you find a good doctor.  I live in the midwest and I fly to California to see my endo.  I can help with this if you need.

I also take Fludrocortisone.  Many people with Addison's do not need it, but many do, so please have your Renin and Aldosterone checked if you haven't already.

You may want check: DHEA and Testoserone, they are produced in the adrenals,  I take both. 

The Addison's.org.uk group has a wealth of information, I am not a member, but I have learned so much just reading the site.  Please make sure you read about crisis management.   

Ask your doc to RX an emergency 100mg Solu-Cortef injection, that you can keep with you.

 I wear a medic alert bracelet with info on Adrenal Crisis.

T

 

 

 

 

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